Monday, 7 October 2013
Mojo and Forgetting the Pain (But I Still Can't Dance)
523 days. To watch me walk now, you'd never know there is anything wrong.
I gave up the cane during the summer because it was getting in the way of my mojo. I found that I was wanting to walk faster than I could move the cane, so the cane had to go. It was a bit of a mental exercise to venture out into the world without it because I knew it was the only signal to the world at large that I have a disability, but I have survived. I was right to be cautious. People once again treat me like just any other commuter: GET THE HECK OUT OF MY WAY! But that's life in a big city, and I'm keeping up just fine.
Stairs are still problematic. When I'm feeling sassy-confident, I'll try the stairs "no hands", but for the most part I need to hold onto the handrail for both up and down. And most importantly, I have to be looking at my feet. I tried carrying a basket of laundry down the stairs the other day - that wasn't such a good plan. I didn't go ass over tea kettle or anything like that, but I couldn't see over the pile of laundry, so I didn't know when my foot was actually on the step. Lack of touch sensation will do that to you.
The numbness, tingling and quasi-pain. My 24/7 constant companion. My brain hasn't figured out yet that those signals are imposters, sending false reports that something is wacky and needs to be corrected. Nothing is wacky ... just the nerve system itself. I'd love an "off" switch for that, thank you very much. But with a refusal to be medicated (does such medication even exist?), I'm stuck with the constant ringing of false alarms. A cool side note ... if I rub my hand on my thigh, the ball of my foot tingles, but unfortunately not in a good way. A second cool side note ... every now and then I forget about the pain. Not for long periods of time, but I am starting to have moments when I can focus on something else and my brain blocks out the sensations. I'm looking forward to having more and more of those moments.
I haven't run (my Sports Med axed that idea), I haven't found a good work/workout/domestic life/rest balance and the tingling drives me crazy, but I am chipping away at my list of things to regain. I can run across the street if I have to (it's not pretty, but it works), I can balance on one foot, I can walk backwards and I'm not totally shattered by 8pm.
I can't dance yet, but maybe one day I will.
If this surgery has happened to you, please feel free to reach out to me any time at sarahependymoma@gmail.com. There are so few of us out there, and we can learn so much from each other.
Friday, 3 May 2013
My Surgiversary
Yesterday was my 1st surgiversary.
I figure it's like marriage - the first year is the hardest, then after that you kinda get used to each other. You drive each other crazy sometimes, but overall, you'll keep what you have instead of the alternative.
We had a small celebration last night. Not sure that celebrating the anniversary of your surgery is something that normal people do, but we've already figured out that I aim for "not normal" as often as possible. It was just the two of us with a quiet dinner, a really, really, really fabulous bottle of wine and a new episode of Big Bang Theory.
Today my new cane arrived. I decided that a black cane was inappropriate for summer and that I wanted something a little more seasonal. If you have to use a cane ... make it a fabulous accessory! The other thing I did today was buy a new pair of shoes. Shoes with a
heel. Well, a 3cm heel that is very wide. But it's a heel. Something
to wear with summer skirts. They feel just a little more feminine than loafers and that maybe I'm getting my mojo back.For the first time in a year I feel like I'm getting "me" back, and life is good again. The time has gone by, and life's ebbs and flows have evolved to that point where it's time to say goodbye. Time to move on from the year that was May 2012 - May 2013, to enjoy life and to focus on the future.
So, on this occasion of my surgiversary, I would like to thank those who have supported me, cheered me on, helped me out and given their time and effort to be involved in my recovery. I couldn't have done it without everyone's love and support. If this surgery has happened to you, please feel free to reach out to me any time at intramedullary.ependymoma@gmail.com. There are so few of us out there, and we can learn so much from each other.
I have reached the point in my recovery where there is nothing new to say. It's been a wild ride, but understanding that all good things come to an end, this is my final entry.
Until I wear a stiletto.
Saturday, 27 April 2013
Stairs - the Penultimate Frontier
I have learned that climbing up and down stairs is one of the most mechanically sophisticated things our legs do in a day. It requires strength, it requires balance, it requires the sense of touch, it requires confidence. Most of us learned that when we were 1 to 2 years old. Trial and error, the odd fall, the death grip on the railing. Easy when you're 1 ... the ground isn't very far away. Not so easy when you're 45.
I finally have most of my energy back. I own a treadmill, but walking on that at home is BORING, my bike is on the trainer, but riding that at home is BORING (and I won't ride it off the trainer - the risk of falling is too high), so I've been pretty good lately about getting into the gym.
Now me, being me ... maybe a little intense, maybe a little focused, maybe a wee bit Type A, looked around and said "what is the thing that challenges me the most".
Stairs
So, I got on the stair climber. Not the stepper, the stair climber - the thing that is like a treadmill but with stairs.
The most terrifying 5 minutes of my life.
It didn't help my peace of mind that I wasn't wearing my glasses so I couldn't really see the controls, and that there is no safety stop magnet like there is on a treadmill. When the machine is moving, you can't feel the stair when you step on it, you don't know how much of your foot is actually on the step, and it's keep-up-or-fall-off ... life gets pretty interesting.
But I did it. Sorry brain ... you really need to shut up. I think the biggest challenge was overcoming the self-talk about "what if", calming the fear and just focusing on each step.
That was a couple of weeks ago. Today I'm up to 15 minutes, and going fast enough to raise my heart rate and break a sweat. It's not the 45 minutes I could do a year ago, but 51 weeks ago I couldn't walk.
One final frontier to go ....
Running.
I finally have most of my energy back. I own a treadmill, but walking on that at home is BORING, my bike is on the trainer, but riding that at home is BORING (and I won't ride it off the trainer - the risk of falling is too high), so I've been pretty good lately about getting into the gym.
Now me, being me ... maybe a little intense, maybe a little focused, maybe a wee bit Type A, looked around and said "what is the thing that challenges me the most".
Stairs
So, I got on the stair climber. Not the stepper, the stair climber - the thing that is like a treadmill but with stairs.
The most terrifying 5 minutes of my life.
It didn't help my peace of mind that I wasn't wearing my glasses so I couldn't really see the controls, and that there is no safety stop magnet like there is on a treadmill. When the machine is moving, you can't feel the stair when you step on it, you don't know how much of your foot is actually on the step, and it's keep-up-or-fall-off ... life gets pretty interesting.
But I did it. Sorry brain ... you really need to shut up. I think the biggest challenge was overcoming the self-talk about "what if", calming the fear and just focusing on each step.
That was a couple of weeks ago. Today I'm up to 15 minutes, and going fast enough to raise my heart rate and break a sweat. It's not the 45 minutes I could do a year ago, but 51 weeks ago I couldn't walk.
One final frontier to go ....
Running.
Saturday, 30 March 2013
Brain 1, Legs 0
After I wrote the "well baby visit" post, I published it, then provided the link on Facebook to my limited number of family and friends. Posting the link to FB isn't something I regularly do, but I hadn't written a blog entry in a while so I figured I'd let people know. I guess people actually do read my status updates (that there are no further comments or "likes" 99% of the time tells you how boring most of my life is, I guess)
From the "well baby visit" post, one comment in particular caught my attention ... "now you need to list the things you CAN do". Well. There's something I need to think about. I have fallen into the trap of comparing myself to T-1 presurgery, rather than T+1 post surgery.
In all honesty, I don't remember T+1 very well (or T+45 for that matter), so I spent the evening rereading all 101 entries that I'd written to date (my daughter thought I was waiting up late for her to come home ... ha!.) Holy snicker-doodles ... I have forgotten so much! I mean, I understand that people forget, have selective memories, and bad things fade away, .. but holy crap .. YOU FORGET. I was reading some of the blog entries I wrote, wondering who had written them. I remember the experience, but my memories of it now are so different.
In retrospect there has been so much I have gained. So, to counter balance Thursday's doom and gloom of what I'll never get back, today's thoughts are what I've lost, thought forever gone, but regained.
<insert long, thoughtful pause, lots of writing, editing and eventual deleting>
That's it.
I. Can. Walk.
Those three small words don't really do justice to what has been accomplished. To be able to walk again is so much more overwhelmingly powerful than all of the things I will never do again.
As a side note: It's finally feeling like spring - a nice warm(ish), sunny day, so I hauled my butt off the couch and decided I was going to walk my old 3 mile (5k) warm up loop. My legs were screaming all kinds of weird signals to my brain and they didn't want to go that far, so they are very much NOT IMPRESSED with me right now. But my brain is very happy. Brain 1, Legs 0. I win.
From the "well baby visit" post, one comment in particular caught my attention ... "now you need to list the things you CAN do". Well. There's something I need to think about. I have fallen into the trap of comparing myself to T-1 presurgery, rather than T+1 post surgery.
In all honesty, I don't remember T+1 very well (or T+45 for that matter), so I spent the evening rereading all 101 entries that I'd written to date (my daughter thought I was waiting up late for her to come home ... ha!.) Holy snicker-doodles ... I have forgotten so much! I mean, I understand that people forget, have selective memories, and bad things fade away, .. but holy crap .. YOU FORGET. I was reading some of the blog entries I wrote, wondering who had written them. I remember the experience, but my memories of it now are so different.
In retrospect there has been so much I have gained. So, to counter balance Thursday's doom and gloom of what I'll never get back, today's thoughts are what I've lost, thought forever gone, but regained.
- I can walk. It isn't the sassy swagger that I used to have, but to the casual on-looker, I'm reasonably normal
<insert long, thoughtful pause, lots of writing, editing and eventual deleting>
That's it.
I. Can. Walk.
Those three small words don't really do justice to what has been accomplished. To be able to walk again is so much more overwhelmingly powerful than all of the things I will never do again.
As a side note: It's finally feeling like spring - a nice warm(ish), sunny day, so I hauled my butt off the couch and decided I was going to walk my old 3 mile (5k) warm up loop. My legs were screaming all kinds of weird signals to my brain and they didn't want to go that far, so they are very much NOT IMPRESSED with me right now. But my brain is very happy. Brain 1, Legs 0. I win.
Thursday, 28 March 2013
He Ditched Me
Today was, as I describe it, my 11 month "well baby" check-up. Those appointments that aren't medically necessary, but are a touch point for the doctor and patient to talk about how things are going.
Apparently, all things considered, I rock.
Now, to put that firmly in perspective, there are things that will always challenge me:
My neurosurgeon figures that this is it. I will continue to function in day-to-day life at about 90%. I will continue to adapt and improve in small ways, but those improvements will be due to training and not actual "healing". The goal is to get on with life enough so that the numbness and tingling/pain become white noise - something that is always there but my brain forgets to register.
Given that a year ago I was looking paralysis in the face ... I'll take 90%. There are exceptions to every rule, but I am unlikely to be one of them .. I do not have youth on my side.
So that was the first 10 minutes of my appointment. The rest of the appointment was spent chit-chatting. I learned that he ran marathons too, until an unfortunate medical incident ended that hobby; that he wants to think about retiring, but loves surgery; that he has patients who he remembers fondly and I'm one of them. I thank him for his skill, expertise and excellent care of me. Back in an early post I indicated that the jury was out on my neurosurgeon. The jury is in ... he is fabulous - both in skill and manner.
And then he ditched me. We're done here. The MRI showed complete resection and I had the kind of tumour that doesn't come back. So unless I have some issue down the road that concerns me, I need not see him again.
At least he did it in person :)
Apparently, all things considered, I rock.
Now, to put that firmly in perspective, there are things that will always challenge me:
- I cannot turn quickly - not totally necessary unless the elevators in your building are like the ones in mine ...
- I cannot walk backwards - it's amazing how often we actually do take a step backwards in our day-to-day lives
- I cannot pivot my right foot - again, a useful trick for getting in and out of cars. Now I do the Paris Hilton (or Brittney witthout panties) thing .. sit, then swivel my legs into the car. One could argue it's more lady-like : )
- Stairs. Up or down. Take your pick.
- I fall off bar stools - and that's before I start drinking
- I will never feel temperature or sharp pain in my left leg and hip again
- I will never have proprioception or sensation of touch in my right leg and hip again
- I will never run again
- I will never jump again
- I will never wear stilettos again
My neurosurgeon figures that this is it. I will continue to function in day-to-day life at about 90%. I will continue to adapt and improve in small ways, but those improvements will be due to training and not actual "healing". The goal is to get on with life enough so that the numbness and tingling/pain become white noise - something that is always there but my brain forgets to register.
Given that a year ago I was looking paralysis in the face ... I'll take 90%. There are exceptions to every rule, but I am unlikely to be one of them .. I do not have youth on my side.
So that was the first 10 minutes of my appointment. The rest of the appointment was spent chit-chatting. I learned that he ran marathons too, until an unfortunate medical incident ended that hobby; that he wants to think about retiring, but loves surgery; that he has patients who he remembers fondly and I'm one of them. I thank him for his skill, expertise and excellent care of me. Back in an early post I indicated that the jury was out on my neurosurgeon. The jury is in ... he is fabulous - both in skill and manner.
And then he ditched me. We're done here. The MRI showed complete resection and I had the kind of tumour that doesn't come back. So unless I have some issue down the road that concerns me, I need not see him again.
At least he did it in person :)
Monday, 18 March 2013
Birkenstocks. Finally.
Over the last week or so, I have been chipping away at finding a home in my new basement for my stuff (AKA things that I once deemed important but no longer are, or stuff that I'm convinced I/my child may someday use but likely won't.) My endurance isn't what it used to be, so I couldn't just blitz it all in one day - it's been more of a "just tackle that corner" process. In my determination today to just put away one more box of basement stuff, I found my Birkenstocks (the ones from my cross border adventure last April). Of course, they weren't in the Birkenstock shoe box that I diligently put with my other shoe boxes, it was in a random box of miscellaneous crap that had clearly been dumped into a storage tub in a last minute effort to get the basement cleared out.
They are pristine. Never been worn. Well ... aside from the one time in the hospital when I tried to wear them and I inadvertantly kicked one across the room when my leg went spazzy. I haven't worn anything that just slips on to my feet since. I lost that ability over night.
In a moment of craziness I thought "I wonder if I can wear these" and I slipped them on. LOL ... "I slipped them on" .. yeah, that's how it went. Really I lodged the toe of the sandal against the wall to create the resistance required to wedge my foot in. I don't "slip" anything on my feet any more - I don't have the fine muscle control to do it. At any rate ... I got them on and expected to lose one or both of them in the first 35 seconds.
I walked around the room. I walked to a different room. I continued with the task at hand of putting junk away. I look at the stairs ... now that would be a challenge! I walked up the stairs, and they stayed on!
Who knew ... ten and a half months later I'd finally wear these sandals and celebrate walking up the stairs wearing them. They are sending insane sensations to my brain that my brain doesn't know how to interpret. I'm getting signals that my feet and calves feel tight, tingly, painful-ish, tense and overall weird, but I don't care.
I'm keeping them on, even if I am wearing sports socks with them :)
They are pristine. Never been worn. Well ... aside from the one time in the hospital when I tried to wear them and I inadvertantly kicked one across the room when my leg went spazzy. I haven't worn anything that just slips on to my feet since. I lost that ability over night.
In a moment of craziness I thought "I wonder if I can wear these" and I slipped them on. LOL ... "I slipped them on" .. yeah, that's how it went. Really I lodged the toe of the sandal against the wall to create the resistance required to wedge my foot in. I don't "slip" anything on my feet any more - I don't have the fine muscle control to do it. At any rate ... I got them on and expected to lose one or both of them in the first 35 seconds.
I walked around the room. I walked to a different room. I continued with the task at hand of putting junk away. I look at the stairs ... now that would be a challenge! I walked up the stairs, and they stayed on!
Who knew ... ten and a half months later I'd finally wear these sandals and celebrate walking up the stairs wearing them. They are sending insane sensations to my brain that my brain doesn't know how to interpret. I'm getting signals that my feet and calves feel tight, tingly, painful-ish, tense and overall weird, but I don't care.
I'm keeping them on, even if I am wearing sports socks with them :)
Sunday, 3 March 2013
10 Months Post-Op. Should'a Had a Baby Instead
10 months yesterday. I officially consider today to be 10 months because for the first 24 hours after my surgery I was pretty much stoned out of my mind on the after effects of the anesthetic and the high powered hits of morphine being shot in my direction.
So 10 months ... it's been quite a ride, and not one I would recommend. If you've been diagnosed with this nasty tumour then it doesn't really matter what I recommend, but for the rest of the world ... try to avoid having someone mucking about in your spinal cord. It leaves a nasty after taste.
For those who are facing or have faced this and are looking for a frame of reference, where am I at?
Walking
I can walk. I don't have the same sassy swagger that I used to have, and I would sell my soul to be able to wear stilettos again. The loss of ability to wear stilettos is one of the few things that can bring me to tears. My significant other is okay with the lack of heels (I stand 6' or 6'1" in my favourites), as long as they come out to play. My daughter, who has the same sized foot, is waiting for me to officially decree my high heeled days over so she can inherit my collection. Apparently I'm the only one who wants me to wear them again ...
I am reduced to flat loafer-type shoes. I refuse to go old lady Naturalizer (no offense to Naturalizer ... I'm sure you make lovely shoes), so I mortgaged my house to buy a couple of pairs of kick-ass designer flats. Not ballet flats - I still don't have the fine muscle control that is required to keep a ballet flat on my foot, but fun loafers.
Running
I can't run. Going on the theory that I won't ever run again. It doesn't stop me from trying once in a while on a treadmill, but realistically, that part of my life is over. It sucks.
Stairs
Stairs are coming along, but it is still where people (and me) notice my disability the most. Stairs are where balance meets fine motor control and I don't have much of either ... handrails are my new best friend. But I was proud of myself today ... I was able to carry a box of wine (not boxed wine ... a box with 12 bottles of wine) from the trunk of my car, up my 5 front steps and into the house. They say success is driven by what motivates you :)
Numbness
I describe it as "numbness" but it is the same feeling as when your foot has been asleep, you start to move it, and the mad firey/painful-ish tingles start. That's me. From the hips down. 85% of the time.
Bodily Functions
For the most part, normal but I have "can't feel soft touch" issues. My SO asked me the other day why I don't wear sexy thong undies anymore. Well ... with my soft touch sensory issues I can't tell whether what I'm feeling is the thong, or whether I've pooped my pants. Very distracting. (okay work colleagues ... how's THAT for too much information!)
I also have minor muscle control issues. Because of an unrelated issue (or as it turns out, non-issue) I had to have an ultrasound the other day. At the time of booking, I didn't really think it through, but when I was heading off to the appointment, I realized that I would not be able to drink the required 1L of water. Not because I couldn't drink it ... but because I am left with the inability to hold an over-full bladder. Drinking a litre of water and not voluntarily peeing would result in involuntary peeing. I chose to not drink the water.
I suppose it might have been worth the risk of embarassment, but the ultrasound was precautionary rather than important. Risk vs reward ... nope. Maybe if I'd been having a baby I would have chosen to try to hold my pee for an hour.
So 10 months ... it's been quite a ride, and not one I would recommend. If you've been diagnosed with this nasty tumour then it doesn't really matter what I recommend, but for the rest of the world ... try to avoid having someone mucking about in your spinal cord. It leaves a nasty after taste.
For those who are facing or have faced this and are looking for a frame of reference, where am I at?
Walking
I can walk. I don't have the same sassy swagger that I used to have, and I would sell my soul to be able to wear stilettos again. The loss of ability to wear stilettos is one of the few things that can bring me to tears. My significant other is okay with the lack of heels (I stand 6' or 6'1" in my favourites), as long as they come out to play. My daughter, who has the same sized foot, is waiting for me to officially decree my high heeled days over so she can inherit my collection. Apparently I'm the only one who wants me to wear them again ...
I am reduced to flat loafer-type shoes. I refuse to go old lady Naturalizer (no offense to Naturalizer ... I'm sure you make lovely shoes), so I mortgaged my house to buy a couple of pairs of kick-ass designer flats. Not ballet flats - I still don't have the fine muscle control that is required to keep a ballet flat on my foot, but fun loafers.
Running
I can't run. Going on the theory that I won't ever run again. It doesn't stop me from trying once in a while on a treadmill, but realistically, that part of my life is over. It sucks.
Stairs
Stairs are coming along, but it is still where people (and me) notice my disability the most. Stairs are where balance meets fine motor control and I don't have much of either ... handrails are my new best friend. But I was proud of myself today ... I was able to carry a box of wine (not boxed wine ... a box with 12 bottles of wine) from the trunk of my car, up my 5 front steps and into the house. They say success is driven by what motivates you :)
Numbness
I describe it as "numbness" but it is the same feeling as when your foot has been asleep, you start to move it, and the mad firey/painful-ish tingles start. That's me. From the hips down. 85% of the time.
Bodily Functions
For the most part, normal but I have "can't feel soft touch" issues. My SO asked me the other day why I don't wear sexy thong undies anymore. Well ... with my soft touch sensory issues I can't tell whether what I'm feeling is the thong, or whether I've pooped my pants. Very distracting. (okay work colleagues ... how's THAT for too much information!)
I also have minor muscle control issues. Because of an unrelated issue (or as it turns out, non-issue) I had to have an ultrasound the other day. At the time of booking, I didn't really think it through, but when I was heading off to the appointment, I realized that I would not be able to drink the required 1L of water. Not because I couldn't drink it ... but because I am left with the inability to hold an over-full bladder. Drinking a litre of water and not voluntarily peeing would result in involuntary peeing. I chose to not drink the water.
I suppose it might have been worth the risk of embarassment, but the ultrasound was precautionary rather than important. Risk vs reward ... nope. Maybe if I'd been having a baby I would have chosen to try to hold my pee for an hour.
Monday, 4 February 2013
The CERN Foundation Found Me
I started this blog under duress.
Once my friends and family got over the shock of my diagnosis, they started to tell me I should blog about my exerience. Huh? blog? I had no idea how one even went about blogging ... and isn't that a very public thing to do?
I'm private. Not super-stealth, don't-exist-in-cyberspace private, but by modern standards, private. You'll notice in all the entries that there aren't any pictures that identify me, nor anyone else involved in my journey. I'm sure a hacker-stalker would be able to figure out who I am, but those guys can do that if you just have an on-line email account or a facebook account. There's no getting around Anonymous if they want to find you.
So I blogged, discovered it was a good mental exercise, served as a reminder of how far I've come, and I've continued to blog for selfish reasons.
I never expected more than seven or eight people to read this blog, but in December, an email popped into my inbox. Someone was looking for me. Someone from the CERN Foundation. In retrospect I'm pretty sure I found their website when I was first diagnosed because I went to EVERY website Google returned that seemed legit, but when I received their first email, I thought "who?".
The Foundation is committed to developing new treatments, improving the care of ependymoma patients, and ultimately finding a cure. A truly worthy cause. Duly researched, I replied, and thus started my commitment to share my story with a wider audience.
So, welcome to those who have found me through CERN. I am happy to share my experiences, either publicly via comments, or privately via email (intramedullary.ependymoma@gmail.com).
My story may not be exactly the same as yours, but there are so few of us and there is so little real-life information available on spinal cord tumours, I'm glad to be able to offer you some insights from someone who has "been there, done that, bought the t-shirt".
Once my friends and family got over the shock of my diagnosis, they started to tell me I should blog about my exerience. Huh? blog? I had no idea how one even went about blogging ... and isn't that a very public thing to do?
I'm private. Not super-stealth, don't-exist-in-cyberspace private, but by modern standards, private. You'll notice in all the entries that there aren't any pictures that identify me, nor anyone else involved in my journey. I'm sure a hacker-stalker would be able to figure out who I am, but those guys can do that if you just have an on-line email account or a facebook account. There's no getting around Anonymous if they want to find you.
So I blogged, discovered it was a good mental exercise, served as a reminder of how far I've come, and I've continued to blog for selfish reasons.
I never expected more than seven or eight people to read this blog, but in December, an email popped into my inbox. Someone was looking for me. Someone from the CERN Foundation. In retrospect I'm pretty sure I found their website when I was first diagnosed because I went to EVERY website Google returned that seemed legit, but when I received their first email, I thought "who?".
The Foundation is committed to developing new treatments, improving the care of ependymoma patients, and ultimately finding a cure. A truly worthy cause. Duly researched, I replied, and thus started my commitment to share my story with a wider audience.
So, welcome to those who have found me through CERN. I am happy to share my experiences, either publicly via comments, or privately via email (intramedullary.ependymoma@gmail.com).
My story may not be exactly the same as yours, but there are so few of us and there is so little real-life information available on spinal cord tumours, I'm glad to be able to offer you some insights from someone who has "been there, done that, bought the t-shirt".
Wednesday, 30 January 2013
Like I Haven't Taken on Enough?
I had to stop and wonder ... what on earth am I doing.
At the end of the day ("end of the day" being post-work, dinner and kitchen cleaned up), I need half an hour off my feet before I can handle anything else. It's not so much exhaustion as it is body ache. My muscles are still working overtime to do what other people don't think about.
So, tonight I flopped on the couch and gave myself a deadline of 8pm ... then, no more flopping, there are things to be done and I'm tired of spending most evenings on the couch. I've become a boring old person who has nothing to talk about except kids and work. Ugh. (At least I'm not talking about all my ailments to anyone who will listen yet.)
Deadline arrived ... on to the task at hand. I had disassembled a storage shelving unit so I could move it upstairs, and I wanted to get it reassembled tonight. In my dining room. The logical person might query: "Why would you put a utility shelving unit in your dining room?"
Because I'm crazy.
I got about halfway through the reassembly before I stopped and wondered what the heck I was doing.
A month or so ago, I decided that NOW would be an excellent point in my life to have the basement renovated. You know, now that I'm full of vim, vigour and exuberance to tackle extra things. Right. It seemed like a good idea at the time. Let's take my post-surgery life and combine it with a) back to work full time, b) winter, c) icy winter, d) trying to get back to the gym e) winter f) moving everything out of the basement and g) way too many trips up and down stairs to move stuff out of the basement.
It's amazing how much crap you collect, and it's surprisingly difficult to pack all that crap when you can't squat down or sit on the floor very well, or when you only have the energy to do an hour at a time. No more all-day-blitzes for me.
I'm thinking this wouldn't have been such a monumental task last year.
I'm thinking I would have done more of it myself last year.
I'm thinking I like having strong teenagers who know that mom would do it, but can't.
I'm thinking I'm getting better at asking for help.
I'm thinking maybe I'm being forced to create less work for myself now than I would have before.
I'm thinking that allowing other people to help will make this easier for me than it would have been last year.
I'm thinking ... maybe I'm not so crazy after all.
At the end of the day ("end of the day" being post-work, dinner and kitchen cleaned up), I need half an hour off my feet before I can handle anything else. It's not so much exhaustion as it is body ache. My muscles are still working overtime to do what other people don't think about.
So, tonight I flopped on the couch and gave myself a deadline of 8pm ... then, no more flopping, there are things to be done and I'm tired of spending most evenings on the couch. I've become a boring old person who has nothing to talk about except kids and work. Ugh. (At least I'm not talking about all my ailments to anyone who will listen yet.)
Deadline arrived ... on to the task at hand. I had disassembled a storage shelving unit so I could move it upstairs, and I wanted to get it reassembled tonight. In my dining room. The logical person might query: "Why would you put a utility shelving unit in your dining room?"
Because I'm crazy.
I got about halfway through the reassembly before I stopped and wondered what the heck I was doing.
A month or so ago, I decided that NOW would be an excellent point in my life to have the basement renovated. You know, now that I'm full of vim, vigour and exuberance to tackle extra things. Right. It seemed like a good idea at the time. Let's take my post-surgery life and combine it with a) back to work full time, b) winter, c) icy winter, d) trying to get back to the gym e) winter f) moving everything out of the basement and g) way too many trips up and down stairs to move stuff out of the basement.
It's amazing how much crap you collect, and it's surprisingly difficult to pack all that crap when you can't squat down or sit on the floor very well, or when you only have the energy to do an hour at a time. No more all-day-blitzes for me.
I'm thinking this wouldn't have been such a monumental task last year.
I'm thinking I would have done more of it myself last year.
I'm thinking I like having strong teenagers who know that mom would do it, but can't.
I'm thinking I'm getting better at asking for help.
I'm thinking maybe I'm being forced to create less work for myself now than I would have before.
I'm thinking that allowing other people to help will make this easier for me than it would have been last year.
I'm thinking ... maybe I'm not so crazy after all.
Thursday, 24 January 2013
Winter Hates Me and I Hate Winter
I have a new enemy.
Winter.
I live in a cold climate. Today is -18C (-1F) with a windchill of -25C (-18F). The cold itself is tolerable ... afterall, I was born and raised in this climate so it's not like it's a surprise. I own a full length down coat, I own knee length snuggy boots, hats, gloves, scarvesheated seats in the car ... I'm prepared for winter.
But I'm not prepared for the new me + ice, or the new me + slush. Ice and slush are slippery. I have no balance. A very bad combination.
This past weekend I was out for dinner on Saturday night. When I left to go home it was raining ... not a torrential rain, but enough that the wipers kicked in. I got home safely, tucked myself into bed and enjoyed a good night sleep. I woke up Sunday morning to an overnight flash freeze. The temperature had dropped from +5C to -8C (41F to 17F) overnight and had frozen all the rain. My driveway was a sheet of ice.
I looked at my car parked in the driveway. I looked at the driveway itself. I looked at the 4' of driveway that I had to traverse to get from the walkway to the car. I turned around, went inside and cancelled my movie date.
I wouldn't have given this weather a second thought last year, but now, it is my worst enemy. I have lost all confidence of walking on anything that looks remotely slippery because of my balance issues. If I can trip over myself just walking down the hall indoors, what is ice going to be like?
In the last three years, as an able bodied person, I've fallen twice, HARD, because of ice. Just walking to my commuter train in the dark in the morning, and not really paying attention. So, you can imagine why I would be tentative as a not-so-able-bodied person. For now, I chicken out and avoid it. If not physically, mentally I need more time to believe I can handle the slips, falls and near misses that winter entails.
Winter.
I live in a cold climate. Today is -18C (-1F) with a windchill of -25C (-18F). The cold itself is tolerable ... afterall, I was born and raised in this climate so it's not like it's a surprise. I own a full length down coat, I own knee length snuggy boots, hats, gloves, scarvesheated seats in the car ... I'm prepared for winter.
But I'm not prepared for the new me + ice, or the new me + slush. Ice and slush are slippery. I have no balance. A very bad combination.
This past weekend I was out for dinner on Saturday night. When I left to go home it was raining ... not a torrential rain, but enough that the wipers kicked in. I got home safely, tucked myself into bed and enjoyed a good night sleep. I woke up Sunday morning to an overnight flash freeze. The temperature had dropped from +5C to -8C (41F to 17F) overnight and had frozen all the rain. My driveway was a sheet of ice.
I looked at my car parked in the driveway. I looked at the driveway itself. I looked at the 4' of driveway that I had to traverse to get from the walkway to the car. I turned around, went inside and cancelled my movie date.
I wouldn't have given this weather a second thought last year, but now, it is my worst enemy. I have lost all confidence of walking on anything that looks remotely slippery because of my balance issues. If I can trip over myself just walking down the hall indoors, what is ice going to be like?
In the last three years, as an able bodied person, I've fallen twice, HARD, because of ice. Just walking to my commuter train in the dark in the morning, and not really paying attention. So, you can imagine why I would be tentative as a not-so-able-bodied person. For now, I chicken out and avoid it. If not physically, mentally I need more time to believe I can handle the slips, falls and near misses that winter entails.
Wednesday, 16 January 2013
How it Looks is Not How it Feels
To casually look at me, you would see no disability. You would have no idea that 7 months ago I couldn't walk. If I'm sitting, standing, leaning, lying down ... I look totally normal. My issues are neurological not muscular, so I still look like the (generally) fit, forty-something woman that I was. If it's early in the day, I can even walk normally. Unless you were a specialist, you wouldn't know that I have nerve damage. You cannot see numbness and you cannot see pain.
If you see me go up and down stairs ... well, it's pretty obvious something is wrong. When I get tired my right leg does some pretty funky things and again it's obvious something is wrong. But otherwise I look normal.
So I'm starting to hear a lot of "OMG, you're doing so well !!", or "you look fabulous".
I'm never really sure how to respond to that. The etiquette books would advise that I just say "thank you" and leave it at that. It's not my mission to educate, enlighten or otherwise change the world, so I don't go down the road of detailed explanations either. I realize that most people are just trying to be polite, or friendly, or are looking for something positive to say. I realize that we, as a culture, do not teach our children how to deal with other people's pain, so they don't want to "make us sad".
I grew up in a family where death was a part of every day life. We talked about death and dying, we talked about estate planning, we talked about death in other people's families, we talked about what to say to someone who was grieving. (Well, that was my experience - my siblings may have a totally different story).
For me (your mileage may vary), disability is the same. It's okay to talk to me about it, it's okay to ask questions about it - "what can you feel", "what can you not feel", "what can't you do anymore", "is it weird", "do you get depressed" (but you'd better know me pretty well if you're asking what the sex is like). I would rather you understand that just because I sometimes look "normal", I'm not.
So when you see those people who are parking in handicapped spots who don't look like they should be there, it's okay to call them on it, but do it carefully, understanding that what you see isn't necessarily, the whole story. Something simple, a casual comment ... "it must be tough to have to walk around the mall when walking is difficult". The guilty will know they've been called out, and those with challenges won't feel assaulted.
If you see me go up and down stairs ... well, it's pretty obvious something is wrong. When I get tired my right leg does some pretty funky things and again it's obvious something is wrong. But otherwise I look normal.
So I'm starting to hear a lot of "OMG, you're doing so well !!", or "you look fabulous".
I'm never really sure how to respond to that. The etiquette books would advise that I just say "thank you" and leave it at that. It's not my mission to educate, enlighten or otherwise change the world, so I don't go down the road of detailed explanations either. I realize that most people are just trying to be polite, or friendly, or are looking for something positive to say. I realize that we, as a culture, do not teach our children how to deal with other people's pain, so they don't want to "make us sad".
I grew up in a family where death was a part of every day life. We talked about death and dying, we talked about estate planning, we talked about death in other people's families, we talked about what to say to someone who was grieving. (Well, that was my experience - my siblings may have a totally different story).
For me (your mileage may vary), disability is the same. It's okay to talk to me about it, it's okay to ask questions about it - "what can you feel", "what can you not feel", "what can't you do anymore", "is it weird", "do you get depressed" (but you'd better know me pretty well if you're asking what the sex is like). I would rather you understand that just because I sometimes look "normal", I'm not.
So when you see those people who are parking in handicapped spots who don't look like they should be there, it's okay to call them on it, but do it carefully, understanding that what you see isn't necessarily, the whole story. Something simple, a casual comment ... "it must be tough to have to walk around the mall when walking is difficult". The guilty will know they've been called out, and those with challenges won't feel assaulted.
Tuesday, 15 January 2013
Excuses and the Old Married Couple
My goal for 2013: Stop using the excuse that I have an excuse.
Huh?
To explain, I need to back up in time a couple of months.
At the end of October they kicked me out of out-patient physio. Said I was doing too well, nothing more they could teach me, everything I was doing I could do on my own. Well, that's a downer - no one I'm forced to show up for.
Then I got sick .. the knock 'em down, drag 'em out, lasts for weeks, kind of sick. I had the cough from hell (and that's fun with a strained/torn lat muscle), zero energy, focused on going to work and getting rid of the never ending illness. I quickly figured out that I couldn't go to the gym before work and still make it through the day, so I stopped going to the gym.
Then we went on vacation - spent two weeks in the sun trying to shed the awfulness that was 2012. No gym there.
Then it was the holidays. You know, mad dash run around, family functions, trying to get together with friends, and hey ... it's already the end of December, might as well just wait until the new year to get back to working out.
So, for November and December I hadn't seen the inside of a gym, nor had I been doing anything at home (I OWN a treadmill from my running days ... how pathetic that I didn't even use it). I had also become used to people telling me it was okay to not work out, because, well, "you have a good reason".
That "good reason" is an excuse.
Using it as an excuse is actually doing me more harm than good. This disability requires that I get into the gym and get a work out if I want to see improvement. My mental health requires that I find some kind of cardio workout to burn off the stress. I'm never going to train my legs to behave normally unless I make them move. I can't control whether or not my nerves heal, but I can control whether or not my legs get enough repetitive motion to retrain themselves. Walking is proof. You should see me walk now. I can MOTOR !! But I've learned how to walk quickly because to survive the rush hour commute in this city, you have to go with the flow. And that flow is FAST. If you're not motoring, you're doomed. It was do or die, so I did. The training of the other muscles in my butt, hips and legs is no different.
So I'm back in the gym. I've been walking and doing weights, but I did a spin class on Sunday - first one in five months. It took some pretty stiff mental discipline to get through the full 55 minutes, my lady bits are killing me today, and the numb legs were kind of weird, but there was improvement. I have changed since the last class I did - I could sit upright and pedal without holding on and without falling off, my right knee was a lot less crazy, and those fast transitions from sitting to standing were easier.
I'm clawing my way back onto the exercise wagon. We're like an old married couple, exercise and I. It's love/hate. We bicker and argue. Sometimes we give each other the silent treatment. But at the end of the day it's comfortable, and it's what I know.
It's 9pm ... past my bedtime, my legs are numb, and I haven't done anything for tomorrow, but the 5:10 am bus beckons in the morning.
Huh?
To explain, I need to back up in time a couple of months.
At the end of October they kicked me out of out-patient physio. Said I was doing too well, nothing more they could teach me, everything I was doing I could do on my own. Well, that's a downer - no one I'm forced to show up for.
Then I got sick .. the knock 'em down, drag 'em out, lasts for weeks, kind of sick. I had the cough from hell (and that's fun with a strained/torn lat muscle), zero energy, focused on going to work and getting rid of the never ending illness. I quickly figured out that I couldn't go to the gym before work and still make it through the day, so I stopped going to the gym.
Then we went on vacation - spent two weeks in the sun trying to shed the awfulness that was 2012. No gym there.
Then it was the holidays. You know, mad dash run around, family functions, trying to get together with friends, and hey ... it's already the end of December, might as well just wait until the new year to get back to working out.
So, for November and December I hadn't seen the inside of a gym, nor had I been doing anything at home (I OWN a treadmill from my running days ... how pathetic that I didn't even use it). I had also become used to people telling me it was okay to not work out, because, well, "you have a good reason".
That "good reason" is an excuse.
Using it as an excuse is actually doing me more harm than good. This disability requires that I get into the gym and get a work out if I want to see improvement. My mental health requires that I find some kind of cardio workout to burn off the stress. I'm never going to train my legs to behave normally unless I make them move. I can't control whether or not my nerves heal, but I can control whether or not my legs get enough repetitive motion to retrain themselves. Walking is proof. You should see me walk now. I can MOTOR !! But I've learned how to walk quickly because to survive the rush hour commute in this city, you have to go with the flow. And that flow is FAST. If you're not motoring, you're doomed. It was do or die, so I did. The training of the other muscles in my butt, hips and legs is no different.
So I'm back in the gym. I've been walking and doing weights, but I did a spin class on Sunday - first one in five months. It took some pretty stiff mental discipline to get through the full 55 minutes, my lady bits are killing me today, and the numb legs were kind of weird, but there was improvement. I have changed since the last class I did - I could sit upright and pedal without holding on and without falling off, my right knee was a lot less crazy, and those fast transitions from sitting to standing were easier.
I'm clawing my way back onto the exercise wagon. We're like an old married couple, exercise and I. It's love/hate. We bicker and argue. Sometimes we give each other the silent treatment. But at the end of the day it's comfortable, and it's what I know.
It's 9pm ... past my bedtime, my legs are numb, and I haven't done anything for tomorrow, but the 5:10 am bus beckons in the morning.
Sunday, 13 January 2013
My Waterloo is a Chair
I've lost track of the number of days since my life changed. I know it's about 8 1/2 months, but I've stopped counting days.
I'm back in the office full time now. And it's hell. But not for the reasons I expected.
For some reason, over the past four months, the numbness in my legs has been getting worse. My feet are always numb, and have been from early on, so unless I'm in hard soled shoes, or on my feet a lot, I'm getting used to it. It's when my legs go numb that life starts to get challenging.
Anyone who has had anything numb (like an "asleep foot"), knows that putting pressure on said numbness turns to pain very quickly. My intellect knows it's not actually pain, but nonetheless, all the self-talk and positive reinforcement cannot convince my brain otherwise. So when my legs go numb, sitting gets to be an adventure in "suck it up".
I have a desk job. I am fortunate that it's not a "tied to my desk" job and I have the luxury of being able to walk around, pretty much when I need to. But lately it seems that all the walking in the world isn't helping, so my disability insurer called in ergonomic specialists.
I'm a skeptic. I've never really believed in ergonomics. Yeah, whatever. It's a chair. A keyboard tray never changed anyone's life, and spare me those gel wrist things ... I spent too many years playing the piano to ever rest my wrists on anything. Just get a decent chair and move on. It seems like people trained to be ergonomic specialists have had it drilled into them that if you can get people into the proper kinetic position, their ails will disappear. I learned fast that "proper position" causes my numbness pain to go off the charts within half an hour. The pressure points are the same as my trigger points.
I'm generally okay at home (though there is a couch I can't sit on for more than 30 minutes anymore), but I spend much of my home time sitting sideways on the couch with my feet up, laptop on my lap. We've tried to replicate that with "the Cadillac of chairs". It didn't work. I tried the Cadillac leg rest - it really was beautiful ... like a supportive ottoman. It didn't help. There is one more footrest they are going to try and if that doesn't work, I will have to concede that I was right about ergonomics, for me. There hasn't been a modification the specialists have been able to come up with that's worked yet.
I swung by Human Resources the other day to say that the ergo guy was coming in AGAIN to try a new configuration and she said to me "at what point does your doctor say that you just aren't able to sit for more than an hour or so".
I was stunned. It never occured to me that it couldn't be fixed.
I'm the queen of suck it up but the inability to find the right chair might be my Waterloo.
I'm back in the office full time now. And it's hell. But not for the reasons I expected.
For some reason, over the past four months, the numbness in my legs has been getting worse. My feet are always numb, and have been from early on, so unless I'm in hard soled shoes, or on my feet a lot, I'm getting used to it. It's when my legs go numb that life starts to get challenging.
Anyone who has had anything numb (like an "asleep foot"), knows that putting pressure on said numbness turns to pain very quickly. My intellect knows it's not actually pain, but nonetheless, all the self-talk and positive reinforcement cannot convince my brain otherwise. So when my legs go numb, sitting gets to be an adventure in "suck it up".
I have a desk job. I am fortunate that it's not a "tied to my desk" job and I have the luxury of being able to walk around, pretty much when I need to. But lately it seems that all the walking in the world isn't helping, so my disability insurer called in ergonomic specialists.
I'm a skeptic. I've never really believed in ergonomics. Yeah, whatever. It's a chair. A keyboard tray never changed anyone's life, and spare me those gel wrist things ... I spent too many years playing the piano to ever rest my wrists on anything. Just get a decent chair and move on. It seems like people trained to be ergonomic specialists have had it drilled into them that if you can get people into the proper kinetic position, their ails will disappear. I learned fast that "proper position" causes my numbness pain to go off the charts within half an hour. The pressure points are the same as my trigger points.
I'm generally okay at home (though there is a couch I can't sit on for more than 30 minutes anymore), but I spend much of my home time sitting sideways on the couch with my feet up, laptop on my lap. We've tried to replicate that with "the Cadillac of chairs". It didn't work. I tried the Cadillac leg rest - it really was beautiful ... like a supportive ottoman. It didn't help. There is one more footrest they are going to try and if that doesn't work, I will have to concede that I was right about ergonomics, for me. There hasn't been a modification the specialists have been able to come up with that's worked yet.
I swung by Human Resources the other day to say that the ergo guy was coming in AGAIN to try a new configuration and she said to me "at what point does your doctor say that you just aren't able to sit for more than an hour or so".
I was stunned. It never occured to me that it couldn't be fixed.
I'm the queen of suck it up but the inability to find the right chair might be my Waterloo.
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