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People Feeling Sorry For You

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34 replies to this topic

Poll: Perception and other's emotional reactions (38 member(s) have cast votes)

How do you feel about people feeling sorry for you?

  1. Depends on the person (13 votes [25.00%] - View)

    Percentage of vote: 25.00%

  2. It makes me uncomfortable (19 votes [36.54%] - View)

    Percentage of vote: 36.54%

  3. It makes me feel weak (5 votes [9.62%] - View)

    Percentage of vote: 9.62%

  4. It makes me feel like they care (3 votes [5.77%] - View)

    Percentage of vote: 5.77%

  5. It makes me feel bad (4 votes [7.69%] - View)

    Percentage of vote: 7.69%

  6. I feel like an emotional burden (6 votes [11.54%] - View)

    Percentage of vote: 11.54%

  7. Mark this as your answer, write which #s apply, feelings not listed & # of years injury (2 votes [3.85%] - View)

    Percentage of vote: 3.85%

How long did it take you to accept your injury?

  1. less than 6 months (7 votes [16.28%] - View)

    Percentage of vote: 16.28%

  2. less than a year (2 votes [4.65%] - View)

    Percentage of vote: 4.65%

  3. less than 2 years (4 votes [9.30%] - View)

    Percentage of vote: 9.30%

  4. less than 3 years (2 votes [4.65%] - View)

    Percentage of vote: 4.65%

  5. less than 4 years (1 votes [2.33%] - View)

    Percentage of vote: 2.33%

  6. less than 5 years (2 votes [4.65%] - View)

    Percentage of vote: 4.65%

  7. Have not accepted (2 votes [4.65%] - View)

    Percentage of vote: 4.65%

  8. Have accepted to some degree (8 votes [18.60%] - View)

    Percentage of vote: 18.60%

  9. Have accepted physical but not emotional (4 votes [9.30%] - View)

    Percentage of vote: 9.30%

  10. Have accepted emotional but not physical (0 votes [0.00%])

    Percentage of vote: 0.00%

  11. It's a roller coaster (10 votes [23.26%] - View)

    Percentage of vote: 23.26%

  12. Mark as answer and indicate numbers that apply and things not mentioned (1 votes [2.33%] - View)

    Percentage of vote: 2.33%

Do your symptoms fluctuate?

  1. No (8 votes [21.05%] - View)

    Percentage of vote: 21.05%

  2. By hours (12 votes [31.58%] - View)

    Percentage of vote: 31.58%

  3. By days (11 votes [28.95%] - View)

    Percentage of vote: 28.95%

  4. By weeks (2 votes [5.26%] - View)

    Percentage of vote: 5.26%

  5. By months (4 votes [10.53%] - View)

    Percentage of vote: 10.53%

  6. By years (1 votes [2.63%] - View)

    Percentage of vote: 2.63%

Have your symptoms improved over time?

  1. Yes (9 votes [21.43%] - View)

    Percentage of vote: 21.43%

  2. No (11 votes [26.19%] - View)

    Percentage of vote: 26.19%

  3. It's a roller coaster but better than the first months (10 votes [23.81%] - View)

    Percentage of vote: 23.81%

  4. It's a roller coaster, sometimes I'm back where I started (3 votes [7.14%] - View)

    Percentage of vote: 7.14%

  5. It's a roller coaster, but I seem to be declining over time (9 votes [21.43%] - View)

    Percentage of vote: 21.43%

Do you keep a log of symptoms?

  1. Yes (10 votes [26.32%] - View)

    Percentage of vote: 26.32%

  2. No (28 votes [73.68%] - View)

    Percentage of vote: 73.68%

What do you think people w/o SCI and no experience with it would be surprised to learn?

  1. Describe answer to Q (25 votes [62.50%] - View)

    Percentage of vote: 62.50%

  2. Describe what percent of the people you've tried to explain to understands (15 votes [37.50%] - View)

    Percentage of vote: 37.50%

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#1 Outlier

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Posted 07 February 2013 - 08:59 PM

Hi All:

 

Please add comments of your own I did not cover in terms of the SCI person and those w/o.

 

Hope you're having a great day!



#2 JerseyBoy

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Posted 07 February 2013 - 10:20 PM

How do you feel about people feeling sorry for you?
I understand why they do. I think it's a normal response so as long the person doesn't bringing it up, it's cool.

How long did it take you to accept your injury ?
Most SCIs goal is to one day walk when there first gimped. My priority was to play sports and compete. It's was pretty plain n simple that I was never going to compete with the AB population again so I accepted it while I was in the ICU. the fact that I CAN walk is fantastic but doesn't effect how I compete. I guess I love competing more than walking.

Symptoms
Pains, spasms fluctuate day to day but motor function is constant

Improvements
Asia A on vent to Asia D walker, holla

Log of symptoms
12/30/11- rest of my life. Pain , spasms, double vision, once in a while shit piss myself, fatigue, get bitches

Learning
SCI effects EVERYTHING. This ain't no broken leg. behind my smile is a world n past of struggles.
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Either you choose to be blessed to be cursed or cursed to be blessed. I choose to be blessed to be cursed. 

#3 Jemic

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Posted 07 February 2013 - 10:29 PM

I think it's only a very small percentage of people that understand in any way! Maybe 5% and even then it's only PT's that seem to have any idea..

Edited by Jemic, 07 February 2013 - 10:29 PM.

A friend is someone who knows the song in your heart,
and can sing it back to you when you have forgotten the words ;) xx

#4 Outlier

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Posted 08 February 2013 - 10:00 AM

I went out with an ex-boyfriend last night (3rd time out to socialize since being back in Hawaii of December 2012). I feel that because times are tough for many people they really don't need extra stress and I feel because of my SCI, I am a burden; I feel like a failure; I feel bad about their perception of me. I explained to him that I don't want you to look at me and feel sorry; I want you to see that despite adversity, I am still fighting, making progress. I may have been ahead in other ways before but I have really tried and continue to try my best under the circumstances and if anything I am proud of myself. I think I am like JB -- a competitor and this is just a different type of competition. I have to work harder; I have lost a lot of energy and easily fatigue but I'm still in the game of life. So I mentioned something about my application for SSI and he said that's not much money. I said it is better than nothing -- everything is relative. I don't wan't to be on SSI (pending still) but I also know my limitations for now and my hope is that I will make progress and hopefully will be some place I WANT TO BE in the future. There are many roads and now I have to learn to navigate a new one. Part of dealing with this stuff is accepting limitations and also accepting that things have changed and learning new strategies given the current conditions. It's kind of like the "tortes and the hare" -- I'm hoping with a constant strive to do just a little better than the day before (even with set backs, sometimes months), that I'll find ways to improve my quality of life even if the roller coaster remains. Ironically, I think "social support" can be negative -- it's like Judgement Day. Where I end up, is up to me and I don't want anyone to tell me I can't climb the mountain in front of me -- I just have to find a different way and continue to work on maximizing what I can and when I can. I have to quote one of my favorite sit-com movies "Galaxy Quest" -- "Never give up! Never surrender!" 


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#5 D. Smith

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Posted 08 February 2013 - 05:05 PM

What bothers me the most about people feeling sorry for me is that most that do only see me for a split second in time.  They only have the one instance they've seen me to try to grade how I'm doing.  I understand most are empathetic to my situation but I have been approached by people saying they feel sorry for me and my response is simple.  Why?  As arrogant as this is going to sound, I guarantee I've done more in the world while in my chair than they've done walking.  I'm like Outlier and JB, I'm competitive and I HATE not being able to finish something.  So I just adapt and overcome.  Luckily for me my friends treat me exactly the same as before SCI.  To the point that they've left me in cars and wondered why I wasn't coming along.  The other folks out there, now that is a whole different story.  As far as people who "get" it, I have to rule that maybe 3% around here understand to any kind of level get it.  I've been fortunate enough to be able to speak to an OT program at Milligan College here and give them a perspective of what SCI life is actually like versus what it is portrayed by society to be.  By the way, good luck on your SSI claim Outlier! 


When in Rome, go naked! --xbox360 tag: Ice764
-- You have to crawl before you walk; You have to slide before you depress; You have to love before you live. --

#6 The Black Sheep

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Posted 08 February 2013 - 05:18 PM

I think it completely depends on the person. Normally I don't care what strangers think, but my closer family and friends, I would like them to know why I feel like I'm a burden. Not so much so that I'm in a pity party, but things like leaving a dinner table before everyone's done eating so I can cath, why I don't visit my sister often because she has a bazillion stairs in front of her house, why I don't like traveling in other people's car... I have my reasons, and it's not that I want people to feel sorry for me, but I want them to know why I don't do these things easily.

 

Strangers or people who don't really know me, if they're curious or genuinely interested in SCI, I'm an open book but I make a point that I'm not a victim. I'm happy, somewhat accomplished and I have things to look forward to. There is little to feel sorry for.

 

Some people will get it, others wont, which is fine.


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3 doctors diagnosed me with hysterical paralysis (weee!), 1 diagnosed an incomplete T7, another T2 and the last (and most accurate) T5. Trampolines are BAD. Sleep is unpredictable. And never kiss strangers. Life has moved on.

#7 Outlier

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Posted 09 February 2013 - 09:21 AM

What bothers me the most about people feeling sorry for me is that most that do only see me for a split second in time.  They only have the one instance they've seen me to try to grade how I'm doing.  I understand most are empathetic to my situation but I have been approached by people saying they feel sorry for me and my response is simple.  Why?  As arrogant as this is going to sound, I guarantee I've done more in the world while in my chair than they've done walking.  I'm like Outlier and JB, I'm competitive and I HATE not being able to finish something.  So I just adapt and overcome.  Luckily for me my friends treat me exactly the same as before SCI.  To the point that they've left me in cars and wondered why I wasn't coming along.  The other folks out there, now that is a whole different story.  As far as people who "get" it, I have to rule that maybe 3% around here understand to any kind of level get it.  I've been fortunate enough to be able to speak to an OT program at Milligan College here and give them a perspective of what SCI life is actually like versus what it is portrayed by society to be.  By the way, good luck on your SSI claim Outlier! 

Thanks for the good luck! That's cool that you've gotten out to OT college students.  Right now I'm trying to find someone who specializes in SCI for PT and OT -- we don't have any CARF but some that deal with "neurological." I've been to one for 16 sessions and I think I need to keep looking.



#8 D. Smith

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Posted 09 February 2013 - 08:43 PM


What bothers me the most about people feeling sorry for me is that most that do only see me for a split second in time.  They only have the one instance they've seen me to try to grade how I'm doing.  I understand most are empathetic to my situation but I have been approached by people saying they feel sorry for me and my response is simple.  Why?  As arrogant as this is going to sound, I guarantee I've done more in the world while in my chair than they've done walking.  I'm like Outlier and JB, I'm competitive and I HATE not being able to finish something.  So I just adapt and overcome.  Luckily for me my friends treat me exactly the same as before SCI.  To the point that they've left me in cars and wondered why I wasn't coming along.  The other folks out there, now that is a whole different story.  As far as people who "get" it, I have to rule that maybe 3% around here understand to any kind of level get it.  I've been fortunate enough to be able to speak to an OT program at Milligan College here and give them a perspective of what SCI life is actually like versus what it is portrayed by society to be.  By the way, good luck on your SSI claim Outlier! 

Thanks for the good luck! That's cool that you've gotten out to OT college students.  Right now I'm trying to find someone who specializes in SCI for PT and OT -- we don't have any CARF but some that deal with "neurological." I've been to one for 16 sessions and I think I need to keep looking.

Luckily my out patient PT had some experience with SCI but even she had limited. My neck of the woods doesn't hold a great deal of SCI experience. Not happy with your current one?
When in Rome, go naked! --xbox360 tag: Ice764
-- You have to crawl before you walk; You have to slide before you depress; You have to love before you live. --

#9 Outlier

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Posted 10 February 2013 - 02:15 PM

 


What bothers me the most about people feeling sorry for me is that most that do only see me for a split second in time.  They only have the one instance they've seen me to try to grade how I'm doing.  I understand most are empathetic to my situation but I have been approached by people saying they feel sorry for me and my response is simple.  Why?  As arrogant as this is going to sound, I guarantee I've done more in the world while in my chair than they've done walking.  I'm like Outlier and JB, I'm competitive and I HATE not being able to finish something.  So I just adapt and overcome.  Luckily for me my friends treat me exactly the same as before SCI.  To the point that they've left me in cars and wondered why I wasn't coming along.  The other folks out there, now that is a whole different story.  As far as people who "get" it, I have to rule that maybe 3% around here understand to any kind of level get it.  I've been fortunate enough to be able to speak to an OT program at Milligan College here and give them a perspective of what SCI life is actually like versus what it is portrayed by society to be.  By the way, good luck on your SSI claim Outlier! 

Thanks for the good luck! That's cool that you've gotten out to OT college students.  Right now I'm trying to find someone who specializes in SCI for PT and OT -- we don't have any CARF but some that deal with "neurological." I've been to one for 16 sessions and I think I need to keep looking.

Luckily my out patient PT had some experience with SCI but even she had limited. My neck of the woods doesn't hold a great deal of SCI experience. Not happy with your current one?

No, not happy with the current. People view things as static and my symptoms are anything but static. I actually had a PT say I didn't need an assistive device. I said, I've cancelled on you 50-75% of the time...have you thought to wonder why? It's because my legs aren't working. Yes, I need an assistive device. Any and I got an Rx for OT and they said, you don't need that. Yeah, I do. It takes me about 3 hours to get done what I use to do in a half hour and mornings are the biggest challenge. I have a nice big chair in the shower so I don't fall (provided by a friend). I have to work at walking for hours before I can venture out (on good days) and I've been laid up for months at times. So I can only make late afternoon apts with a caveat. I know this is nothing like complete but it is extremely stressful because each night before you go to bed you wonder if you will be able to do things the next day. I look like I'm drunk and my legs look like over cooked spaghetti trying to stand. I ended up in the hospital in August for internal bleeding and this is when my doctor got to see how things play out. I needed two people to get me to the bathroom and they tried to restrain me from trying to walk. I told my doctor, if I don't work at it for hours, they won't work at all -- I have to go through hours of "training" before I can venture out (again, on good days) but keeping me bed ridden, they just fail. The extremes in functionality are just freaking weird and I can't figure out why this day/hour and not others. So to make my long story short, these people clearly have no idea (at least my doctor does) but I need to get assitive devices to see how that pans out. I also have no arm strength so I'm debating how to deal with this. I can look somewhat normal and then not at all. Trying to figure out the whys are driving me crazy.


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#10 Tetracyclone

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Posted 11 February 2013 - 01:21 AM

To keep things in perspective, for hundreds of years and today in many countries, if people did not feel sorry for us however would we earn coins on street corners? 


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#11 Edinburgh Colin

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Posted 11 February 2013 - 01:57 AM

I have not tried to explain it to many people other than family and a couple of close mates back in the early days but I think the biggest surprise to the vast majority of people is that it's not just about the walking.
Many assume that your legs don't work and you will have no feeling from the waist down (just a paras point of view here). They have no idea that you may be able feel but not move (and vice a versa), have spasms, need intervention to keep your insides functioning etc, etc, .....
To be honest if you have not had any interaction with SCI why would you think any different?

EC.
Impossible only describes a problem that needs viewed from a different perspective

#12 D. Smith

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Posted 11 February 2013 - 06:22 AM

As bad as this may sound, I've been blessed in a way that I am complete in the sense that its easier for me to explain my issues.  Granted spasms are always fun to explain and people still look at me as though I'm a faker when I have em, but I don't even bother trying to explain that I can only walk with leg braces (KAFO) and a walker and that it requires so much more energy than is possible to do normal things.  What takes me 2 minutes to do in a wheelchair would easily take me 20-30 minutes walking.  When people now ask me if I'll ever walk again I either resort to "they don't know" (which is true) or a simple no.  But I feel for you Outlier as you're right, the symptoms are anything but static.  SCI's are far more complex than anyone (who doesn't have one) can fathom. 

 

@EC: About 20% of people assume that with me.  About 30% talk louder and slower to me if I haven't spoke to them because they think mentally as well as physically handicapped.  The rest are either older people giving me dirty looks because they think I'm lazy or people truly having no idea what is going on.


When in Rome, go naked! --xbox360 tag: Ice764
-- You have to crawl before you walk; You have to slide before you depress; You have to love before you live. --

#13 lavenderthistle

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Posted 11 February 2013 - 04:46 PM

I think rollercoaster describes it best.  I hate hearing;

 

oh how awful

how brave you are

i'm proud of your attitude

it's your fault

you should be happy

 

but on other days those same phrases don't bother me as much....so roller coaster applies

 

The physical fluctuations couple with emotional fluctuations.  Some of my friends don't understand the fluctuations...my GP doesn't, my Mother and Sister understand nothing nor do they care to.  The fluctuations are so hard to cope with.


If an idiot speaks in an empty room, do they still sound dumb??

#14 PNW_Doug

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Posted 12 February 2013 - 04:09 AM

I know that song Outlier. My doctor told me I get along just fine with crutches and AFOs. He said "If you get a wheelchair you may never use your legs again. Use it or lose it." My response was "If it drastically lessens my pain AND improves my quality of life, why do you care if I use one?" He didn't disagree after that and he turned in a referral to OT for a wheelchair for me.

 

There is a condition I experience called "Payback Pain." It's the pain the day or days after a very active day. It usually keeps me in bed anywhere from 1 to 3 days depending on how much I push my body on the active day. I have had friends and doctors tell me that I need to shake it off and push through it if I want to get back what my body used to be able to do. If they really knew what I was feeling they wouldn't open their ignorant mouths. If they want to light their feet on fire and feel burning hot needles in their legs. back and the tender bits in the saddle area and "push through it", be my guest. If it wasn't for my dog I would have given up on life already. He loves me and doesn't judge me any differently on good days or bad. Good days mean that I don't dread trying to move. Bad days it takes me a lot of will power to even attempt getting out of bed. Good or bad it takes me easily 3 times longer to do everything each morning that used to take me only a few minutes. Getting out of bed and taking care of my dog was a 5 minute or less activity in a 2 story house. Now in a one story home it takes anywhere between 15 and 30 minutes, if I can get my legs to move without too much concentration.

 

Here are a few examples of the pre vs post activities.

 

Walk 35 feet from my bed to the back door: Pre - 3 min while half asleep. Post - 10 min with crutches and AFOs. or 2 min with a wheelchair + 2 to 3 minutes to get in the chair.

Shave, brush teeth, shower: Pre - 15 to 20 min. Post - Got an hour to spare?

Get in my car to go someplace. Pre - 2 or 3 min if my shoes were off. Post - 10 minutes to put my shoes, and AFOs on. 5 minutes to lock my door and hobble to the car. Another 5 or 10 minutes to recover once in the car.

 

Everything seems to take longer except the toaster. :crazy:

 

Good luck with SSD. I know I would have to fight for it also. My doctor has said I shouldn't be working anymore. I am lucky I still have a job that I have been at for many years. If I had to start at a new job it would be very difficult to do. I would have to go on disability if I ever lose this job. Financially I am not ready to survive on disability pay only. The only thing I know for sure is that I would lose my house. I have an insurance policy that pays for it if I get put on SSD.


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#15 Outlier

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Posted 13 February 2013 - 04:39 AM

Hi all:

 

Thanks for the replies!

 

It seems we're all pretty much on the same page -- differences in some things but overall, it seems most people do not understand SCI. I know I didn't before I got it. I used to teach about neurological illnesses and I'll tell you my one big surprise -- the EXTREME variability of symptoms. The "payback pain" I get too but also "payback fatigue" and new injuries to legs/feet, sometimes arms/hands from just trying to use these things. If I have a good day, I try to push it because they don't happen everyday much less every week or month. So when I can go, I have a lot I need to squeeze in while I have the ability to. It would be useful to get attention to this via "opinion" or "editorials" or other means. But if we were to collectively say anything, what is it that we would want to convey to the novice reader? For me it would be the variability, the fatigue, the stress of not being able to commit because of these things (the unknown), and the emotional toll (via others, to others). This is off the top of my head but I think it is worth exploring.



#16 Wastingtime23

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Posted 19 April 2013 - 02:49 AM

When someone feels sorry for me it makes me feel disgusting, of lesser worth and physically unclean (if that even makes sense).



#17 lelarson93

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Posted 19 April 2013 - 03:03 AM

I've had the hardest time explaining that I can do things on my own, people tend to insist that I need help. 


Life's what you make it, so take every opportunity to dance in the rain.


#18 A trophy guy

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Posted 19 April 2013 - 04:01 AM

I want empathy not sympathy, certainly never pity. 


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Blessed but Cursed

#19 BarrattRN

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Posted 23 April 2013 - 08:00 AM

When I was in rehab I had an OT try to teach me how to put a shoe on with a grabber. I picked my leg up with my band and put my shoe on. They just think everyone fits in a box. Of course they also put a bib on me and had to watch me eat... for my low back injury. Felt like jumping from the roof.
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:boxing:  The Minute You Think of Giving Up, Think of The Reason You Held On For So Long.  ~Author Unknown   :boxing:


#20 Tetracyclone

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Posted 23 April 2013 - 11:28 AM

 Of course they also put a bib on me and had to watch me eat... for my low back injury. Felt like jumping from the roof.

 

 

  :lmao:



#21 Big D

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Posted 23 April 2013 - 06:24 PM

OH MY GOD! I would have ripped the bib off and eaten a pile of chicken wings, ravenously. Then I would have chucked the bones at them each wing at a time until they left.


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Gimpin' ain't easy.


#22 Slowlegs

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Posted 23 April 2013 - 07:36 PM

I think people always "feel sorry" for us in one way or another. Heck, I feel sorry for a lot of able bodied people. The worst thing is when people try and keep us under wraps under the guise of protecting us. I have one family member who each year would come to me on the anniversary of my injury with a gloomy look on his face and ask "do you know what day it is"? It seems he is always looking in the negative and backward and used to end up pulling me down. Recently I went flying, he couldn't see the good side of it, just thought constantly that I would hurt myself again. I'm not that fragile but I think people like that can really hold us back if we are not careful and sap any positive belief we have in ourselves if we are not careful.
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#23 BarrattRN

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Posted 23 April 2013 - 10:58 PM

OH MY GOD! I would have ripped the bib off and eaten a pile of chicken wings, ravenously. Then I would have chucked the bones at them each wing at a time until they left.

Dude, by the way...  I love your signature line....



I think people always "feel sorry" for us in one way or another. Heck, I feel sorry for a lot of able bodied people. The worst thing is when people try and keep us under wraps under the guise of protecting us. I have one family member who each year would come to me on the anniversary of my injury with a gloomy look on his face and ask "do you know what day it is"? It seems he is always looking in the negative and backward and used to end up pulling me down. Recently I went flying, he couldn't see the good side of it, just thought constantly that I would hurt myself again. I'm not that fragile but I think people like that can really hold us back if we are not careful and sap any positive belief we have in ourselves if we are not careful.

I guess I have the opposite reaction out of most people.  Despite my partial paralysis, I have gotten to the point where I can walk with very little noticibility.  The situation I often find myself in as a nuse is moving patient's from one bed to another.  I technically can't refuse to lift 50 pounds or less in my current job, but I always make sure there are plenty of people around to help so I can "Lightly assist".  The other nurse looks at me like I'm crazy when I say, "We need to get help moving this patient over because I can lift very little weight."  They are just thinking "What are you complaining about, Your 6'4" tall and you can do this by yourself." (Which probably led to me being in this position in the first place.)


:boxing:  The Minute You Think of Giving Up, Think of The Reason You Held On For So Long.  ~Author Unknown   :boxing:


#24 lavenderthistle

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Posted 24 April 2013 - 03:08 AM

I think people always "feel sorry" for us in one way or another. Heck, I feel sorry for a lot of able bodied people. The worst thing is when people try and keep us under wraps under the guise of protecting us. I have one family member who each year would come to me on the anniversary of my injury with a gloomy look on his face and ask "do you know what day it is"? It seems he is always looking in the negative and backward and used to end up pulling me down. Recently I went flying, he couldn't see the good side of it, just thought constantly that I would hurt myself again. I'm not that fragile but I think people like that can really hold us back if we are not careful and sap any positive belief we have in ourselves if we are not careful.

 

They haven't seen you run away on Piha Beach or they would never think you fragile!!  You are one of the strongest people I know, you survived your injury....but more than that you survived us!  Besides I completely pity you for not having that very toothy fish thing with Dr. Evil!  (you know I can't help being silly!)    :)   :hug:   I miss you!   


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If an idiot speaks in an empty room, do they still sound dumb??

#25 Slowlegs

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Posted 24 April 2013 - 10:43 AM

 



I think people always "feel sorry" for us in one way or another. Heck, I feel sorry for a lot of able bodied people. The worst thing is when people try and keep us under wraps under the guise of protecting us. I have one family member who each year would come to me on the anniversary of my injury with a gloomy look on his face and ask "do you know what day it is"? It seems he is always looking in the negative and backward and used to end up pulling me down. Recently I went flying, he couldn't see the good side of it, just thought constantly that I would hurt myself again. I'm not that fragile but I think people like that can really hold us back if we are not careful and sap any positive belief we have in ourselves if we are not careful.

I guess I have the opposite reaction out of most people.  Despite my partial paralysis, I have gotten to the point where I can walk with very little noticibility.  The situation I often find myself in as a nuse is moving patient's from one bed to another.  I technically can't refuse to lift 50 pounds or less in my current job, but I always make sure there are plenty of people around to help so I can "Lightly assist".  The other nurse looks at me like I'm crazy when I say, "We need to get help moving this patient over because I can lift very little weight."  They are just thinking "What are you complaining about, Your 6'4" tall and you can do this by yourself." (Which probably led to me being in this position in the first place.)

 

I am talking about people I know Barratt. Funny enough I am 6'2" and am told constantly by doctors not to do heavy lifting, pushing cars when I see someone stranded, do landscaping, building things, etc, etc. It's just figuring out If something is there and it needs to be done, like you, I do it. I just think some people in our own families, in trying to protect us, actually end up holding us back. Never mind your injuries, if we let it, perception can be one of the most limiting things we will face I reckon.



 

I think people always "feel sorry" for us in one way or another. Heck, I feel sorry for a lot of able bodied people. The worst thing is when people try and keep us under wraps under the guise of protecting us. I have one family member who each year would come to me on the anniversary of my injury with a gloomy look on his face and ask "do you know what day it is"? It seems he is always looking in the negative and backward and used to end up pulling me down. Recently I went flying, he couldn't see the good side of it, just thought constantly that I would hurt myself again. I'm not that fragile but I think people like that can really hold us back if we are not careful and sap any positive belief we have in ourselves if we are not careful.

 

They haven't seen you run away on Piha Beach or they would never think you fragile!!  You are one of the strongest people I know, you survived your injury....but more than that you survived us!  Besides I completely pity you for not having that very toothy fish thing with Dr. Evil!  (you know I can't help being silly!)     :)   :hug:   I miss you!   

 

Thanks LT, I am looking forward to you running over my toes on a beach near you one day real soon. :-)



#26 Squelen

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Posted 24 April 2013 - 03:27 PM

What bothers me the most about people feeling sorry for me is that most that do only see me for a split second in time.  They only have the one instance they've seen me to try to grade how I'm doing.  I understand most are empathetic to my situation but I have been approached by people saying they feel sorry for me and my response is simple.  Why?  

totally agree – it really annoys me that people think they understand when actually they have only seen a very small slice of what life is like for me in a chair. People have told me that  "I am inspirational" and frankly I find that offensive… Depending on what mood I'm in! They think they know how difficult it is, and they are trying to be empathetic, but frankly we all have to get up out of bed and get on with life. If I've inspired someone to actually go do something then great (or the next person who says it to me, I'll be asking what they've been inspired to do because of me… :girl_devil: )

and as for feeling sorry for me – it makes me so angry, I'd actually want to hit them! (okay – I have unresolved issues, but hey don't we all?) If I end up feeling sorry for myself , I really wouldn't get up out of bed everyday. It is so not helpful therefore for someone to feel that way towards me. but then again, I would have to add the disclaimer that it is a rollercoaster of emotions and someday's it's not as bad a reaction as others.

 

I have attempted many times to explain to people what life is like – I write a blog for that exact purpose: to try and get out there. But one thing I know is that previous to my injury I worked with various people in wheelchairs, and I thought I understood or had at least a decent grasp of what was going on. I now realise I knew absolutely nothing…it's only now, post sci, that I have any concept of what it truly means. My closest friends and family get this. They know that they will never really know what it's like, but as for everyone else they can only try.


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please read my blog "Transformer-Tetras: Humans in Disguise" at tingletetra.blogspot.co.uk. An attempt to share from sitting in a chair,  :wacko:


#27 BarrattRN

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Posted 26 April 2013 - 03:49 AM

Hi All:

 

Please add comments of your own I did not cover in terms of the SCI person and those w/o.

 

Hope you're having a great day!

Where you hiding?  I sent you a private message, but it says you haven't read it...  I need my therapy session... lol


:boxing:  The Minute You Think of Giving Up, Think of The Reason You Held On For So Long.  ~Author Unknown   :boxing:


#28 Outlier

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Posted 27 April 2013 - 01:18 AM

Sorry I have been sooooooooooooo tired. This new house has stairs and I'm wondering if I'm going to make it. It's just a question of time I think until I eat it. Maybe I should consider a helmet. The fatigue has just been crazy!!! I should have added that to my poll. I asked about fluctuations but not specifically fatigue. I'd really like to figure out level of injury, time of injury, etc. to see if this craziness stablizes but so far it seems most have huge fluctuations. I think that is one of the most maddening aspects of this. Will my body work tomorrow? How long is this round? I've gone days to months. I'm going through one of those terror moments -- how do I survive? This is crazy. :dunno:



#29 cathyann0823

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Posted 27 April 2013 - 01:20 AM

Ummm, why did you move into a house with stairs?


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“A diplomat is a person who can tell you to go to hell in such a way that you actually look forward to the trip.” - Caskie Skinnet


#30 Outlier

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Posted 27 April 2013 - 02:02 AM

I think people always "feel sorry" for us in one way or another. Heck, I feel sorry for a lot of able bodied people. The worst thing is when people try and keep us under wraps under the guise of protecting us. I have one family member who each year would come to me on the anniversary of my injury with a gloomy look on his face and ask "do you know what day it is"? It seems he is always looking in the negative and backward and used to end up pulling me down. Recently I went flying, he couldn't see the good side of it, just thought constantly that I would hurt myself again. I'm not that fragile but I think people like that can really hold us back if we are not careful and sap any positive belief we have in ourselves if we are not careful.

That sounds sadistic! I would be tempted to say, if you do this next year I'm going to literally put you in my shoes! :girl_devil:

I'm sure they mean well (I hope they do).



Ummm, why did you move into a house with stairs?

It was either that or the street.



 

What bothers me the most about people feeling sorry for me is that most that do only see me for a split second in time.  They only have the one instance they've seen me to try to grade how I'm doing.  I understand most are empathetic to my situation but I have been approached by people saying they feel sorry for me and my response is simple.  Why?  

totally agree – it really annoys me that people think they understand when actually they have only seen a very small slice of what life is like for me in a chair. People have told me that  "I am inspirational" and frankly I find that offensive… Depending on what mood I'm in! They think they know how difficult it is, and they are trying to be empathetic, but frankly we all have to get up out of bed and get on with life. If I've inspired someone to actually go do something then great (or the next person who says it to me, I'll be asking what they've been inspired to do because of me… :girl_devil: )

and as for feeling sorry for me – it makes me so angry, I'd actually want to hit them! (okay – I have unresolved issues, but hey don't we all?) If I end up feeling sorry for myself , I really wouldn't get up out of bed everyday. It is so not helpful therefore for someone to feel that way towards me. but then again, I would have to add the disclaimer that it is a rollercoaster of emotions and someday's it's not as bad a reaction as others.

 

I have attempted many times to explain to people what life is like – I write a blog for that exact purpose: to try and get out there. But one thing I know is that previous to my injury I worked with various people in wheelchairs, and I thought I understood or had at least a decent grasp of what was going on. I now realise I knew absolutely nothing…it's only now, post sci, that I have any concept of what it truly means. My closest friends and family get this. They know that they will never really know what it's like, but as for everyone else they can only try.

 

 

 


I have tried to come up with analogies and find it impossible. I used to teach Neuroscience and I had no clue the huge range in fluctuations. I just assumed function was gone...not all the other weird stuff. I already had a high pulse prior (115) and the other night I was seriously freaked out. I didn't take my pulse out of fear -- not even sure I'd be able to measure it. Part of me is wondering if the pulse is making me tired. I had a weird incident when I was younger, when my pulse just went off for a month. My doctor told me I was tired because my heart was doing aerobics 24/7. Time to go to a cardio...

 


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