Hi. I am glad I found this forum. I have been really overwhelmed, fustrated and depressed.
Long story about my spinal cord issues..several surgeries...found I had a chiari malformation that led to cysts, lack of spinal fluid...after 3 weeks of rehab..2 weeks at home, still having problems transferring to/ from the wheelchair. I want to move quickly and know I need to slow it down. I want to walk again and do have movement in my legs even though it is weak and muscles need working out. I cannot stand and am getting home ot and pt right now. I have worked all my life in the mental health field and feel like I am useless. I worry that my lack of working is going to ruin my family however I do have every hope of returning to work maybe in a month or so.. I don't know if it is realistic or not...
as you can see from these loose associations, I have a lot on my mind and really looking for someone that would just talk.
Thanks for allowing me on the site. I think it can be a great source for me. I just need to get my brain in order and try to figure things out before i burn out my husband and son...like I said, I feel very new at this and fustrated.....help
0
Newly In A Wheelchair- Long Recovery, Could Walk Again
Started by
Laura H
, Sep 02 2010 02:55 PM
20 replies to this topic
Top#2
Tetracyclone
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Posted 02 September 2010 - 03:21 PM
Laura,
It will help us advise you if you will fill out your profile including details of the medical issues that led to your being in a chair, and how long it has been going on. Certainly 5 weeks after your last surgery is not enough time to have a clue what your new life will be like.
make a list for yourself of what skills or devices will be necessary in order to return to work, break them down into manageable bits, then keep track of your progress.
You will often see this advice: SCI is not a sprint, it is a marathon, so relax and take it in manageable bits.
Welcome aboard. i look forward to your visits.
Tetra
It will help us advise you if you will fill out your profile including details of the medical issues that led to your being in a chair, and how long it has been going on. Certainly 5 weeks after your last surgery is not enough time to have a clue what your new life will be like.
make a list for yourself of what skills or devices will be necessary in order to return to work, break them down into manageable bits, then keep track of your progress.
You will often see this advice: SCI is not a sprint, it is a marathon, so relax and take it in manageable bits.
Welcome aboard. i look forward to your visits.
Tetra
Look! It's a snail! It's a sloth! Able to creep short distances before lunch!
#3
Wheelsonfire
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Posted 02 September 2010 - 03:31 PM
Laura H, on 02 September 2010 - 02:55 PM, said:
Hi.
Hello
Quote
I am glad I found this forum.
Me too
Quote
I have been really overwhelmed,
Thank you
Quote
fustrated
Is that sexually or just in general?
Quote
and depressed.
Ah you came to the right place, there are some here that depress me also but not to worry you will get use to it.
Quote
I have worked all my life in the mental health field
Brilliant, I might get some advise from you if you don't mind?
How many voices can one hear(you know them voices that no one else can hear)before it's deemed an issue?
Quote
and feel like I am useless.
Still brings back memories of my ex wife
Quote
I worry that my lack of working is going to ruin my family however I do have every hope of returning to work maybe in a month or so.. I don't know if it is realistic or not...
Ah bejeasus tiz
Quote
as you can see from these loose associations, I have a lot on my mind and really looking for someone that would just talk.
Am I helping?
Quote
Thanks for allowing me on the site.
SIMON, your being called!!
Quote
I think it can be a great source for me.
You will learn a lot.
Quote
I just need to get my brain in order and try to figure things out before i burn out my husband and son...like I said, I feel very new at this and fustrated.....help
I'll give you a hand......Ehem......E-DOG.....A little help here please..
----------------------------------------------------------------------------------------------------------
Welcome to the forum Laura and may all your questions find answers
Regards
Seemingly, "support" is very "serious" and you should never have a thought of your own..... My Blog
#4
Laura H
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Posted 02 September 2010 - 04:53 PM
Tetracyclone, on 02 September 2010 - 03:21 PM, said:
Laura,
It will help us advise you if you will fill out your profile including details of the medical issues that led to your being in a chair, and how long it has been going on. Certainly 5 weeks after your last surgery is not enough time to have a clue what your new life will be like.
make a list for yourself of what skills or devices will be necessary in order to return to work, break them down into manageable bits, then keep track of your progress.
You will often see this advice: SCI is not a sprint, it is a marathon, so relax and take it in manageable bits.
Welcome aboard. i look forward to your visits.
Tetra
It will help us advise you if you will fill out your profile including details of the medical issues that led to your being in a chair, and how long it has been going on. Certainly 5 weeks after your last surgery is not enough time to have a clue what your new life will be like.
make a list for yourself of what skills or devices will be necessary in order to return to work, break them down into manageable bits, then keep track of your progress.
You will often see this advice: SCI is not a sprint, it is a marathon, so relax and take it in manageable bits.
Welcome aboard. i look forward to your visits.
Tetra
Thanks Tetra, I will fill in the profile. I am still trying to figure out the support group and how to respond. Not sure if I am even doing this reply correctly.
I know it is a sprint and not a short race. that is the fustrating part but it always helps to be reminded. I am sure I will be on here more with tons of questions and hopefully adivce, one of these days...
Wheelsonfire, on 02 September 2010 - 03:31 PM, said:
Laura H, on 02 September 2010 - 02:55 PM, said:
Hi.
Hello
Quote
I am glad I found this forum.
Me too
Quote
I have been really overwhelmed,
Thank you
Quote
fustrated
Is that sexually or just in general?
Quote
and depressed.
Ah you came to the right place, there are some here that depress me also but not to worry you will get use to it.
Quote
I have worked all my life in the mental health field
Brilliant, I might get some advise from you if you don't mind?
How many voices can one hear(you know them voices that no one else can hear)before it's deemed an issue?
Quote
and feel like I am useless.
Still brings back memories of my ex wife
Quote
I worry that my lack of working is going to ruin my family however I do have every hope of returning to work maybe in a month or so.. I don't know if it is realistic or not...
Ah bejeasus tiz
Quote
as you can see from these loose associations, I have a lot on my mind and really looking for someone that would just talk.
Am I helping?
Quote
Thanks for allowing me on the site.
SIMON, your being called!!
Quote
I think it can be a great source for me.
You will learn a lot.
Quote
I just need to get my brain in order and try to figure things out before i burn out my husband and son...like I said, I feel very new at this and fustrated.....help
I'll give you a hand......Ehem......E-DOG.....A little help here please..
----------------------------------------------------------------------------------------------------------
Welcome to the forum Laura and may all your questions find answers
Regards
#5
Wheelsonfire
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Posted 02 September 2010 - 05:13 PM
Laura H, on 02 September 2010 - 04:53 PM, said:
Now that was funny..you gave me a laugh, several that I have needed for awhile. Thank you.
Glad to be of service.................Now what about helping me, and me, and me out.........jeez I do get mixed up with all these yellow tablets, blue tablets and then there's the BIG white ones, ya know with the whole colour blindness thingy, well lets get back on track, them there BIG white ones sure looks the same as me suppositories, darndest thing happened to me the udder day........Um, one sec and I just get comfy on the couch.......Ok so during my childhood my Uncle brought me to his secret hiding place..........$h!t sorry, wrong forum!!
It will all take time, I would give you a loan of my super powers but it's the only cape me haz and it really suits my eyes(of course I was told this cause me thoughts it waz Grey) so I'm afraid you'll just have to deal with the issues at hand one step at a time...............And remember, PERSPECTIVE, I hate using that word (sshh Mellow) but it allows the glass to be half full at all times.....
Regards
Irishman with issues!!!!!!!
Seemingly, "support" is very "serious" and you should never have a thought of your own..... My Blog
#6
Laura H
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Posted 02 September 2010 - 05:57 PM
Wheelsonfire, on 02 September 2010 - 05:13 PM, said:
Laura H, on 02 September 2010 - 04:53 PM, said:
Now that was funny..you gave me a laugh, several that I have needed for awhile. Thank you.
Glad to be of service.................Now what about helping me, and me, and me out.........jeez I do get mixed up with all these yellow tablets, blue tablets and then there's the BIG white ones, ya know with the whole colour blindness thingy, well lets get back on track, them there BIG white ones sure looks the same as me suppositories, darndest thing happened to me the udder day........Um, one sec and I just get comfy on the couch.......Ok so during my childhood my Uncle brought me to his secret hiding place..........$h!t sorry, wrong forum!!
It will all take time, I would give you a loan of my super powers but it's the only cape me haz and it really suits my eyes(of course I was told this cause me thoughts it waz Grey) so I'm afraid you'll just have to deal with the issues at hand one step at a time...............And remember, PERSPECTIVE, I hate using that word (sshh Mellow) but it allows the glass to be half full at all times.....
Regards
Irishman with issues!!!!!!!
Ah...you are irish as well. too bad the different colored meds and figuring that out take up your time from doing the irish thing. Of course the pills and all have made me just forget that stuff altogether..and I was SOOOOOOOOO good at being irish.
Sounds like I need to get a cape as well. did you make yours or was it given to you by other super resourcs? I can say that your humor has brightened up my day quite a bit.
Ummm.. with the mental health stuff...don't be surprised if I am not as much help. I have been administrating others for about 10 years now...only, I liked prescreening the ones that needed to go to the hospital. That population can be so unique in their delusions and hallucinations. They get their meds messed up too, when they are taking them. Somehow I think their meds are worse than ours though..never tried them but boy, some can pack a punch and get rid of the voices and agitation pretty quick..oh, humm agitation..maybe Ineed to call my team to get me a geodon shot..nah, save it for the ones that try to bust up the nurses at the ER..then again...I suppose I could do that, only with the wheelchair and my arms..but ya know, that takes a LOT of energy...
#7
Wheelsonfire
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Posted 02 September 2010 - 06:52 PM
Ah bejeasus me is a Paddy, and me cape is made from the finest silks......Ah I remember it well, sure wasn't there meself and Mick rambling along through the fairy fort during the wee late hours of the night and stumbled across Fionn, sure he was knee high to a grasshopper and sang the mightiest of song....tra la dee tra la da, just minding his own business under a toadstool, sharpening his vocal cords and meself and Mick got a figary to nab the likkel fecker, afterall, sure wouldn't the wee man do all he could to get back to land of Leprechaunia.....And low and behold we were each given a wish........Ah now, that was the day me life changed for the better, so meself and Mick rambled off, I with me cape, which also makes me invisible by the way and Mick had a lifetime supply of Porter.........................Ah the good ole days, they still bring a tear to me eye!!!
Seemingly, "support" is very "serious" and you should never have a thought of your own..... My Blog
#8
E-DOG
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Posted 02 September 2010 - 11:46 PM
Laura,
Before you work yourself to death, for the sake of your family, you might want to consider this lil' tid bit of sagacity:
YOU ARE NOW PARALYZED!
Give yourself a break, kick back n' relax. Let someone else do a little something for a change.
Maybe the kids could get a paper route. Perhaps dad might try his hand at, oh I don't know, WORKING?
You know, earning a living for his wife and kids?
Hell, if ya want, just get out there an' toil yer lil' self into the grave. While yer at it though, I could use a few bucks myself.
Crack doesn't smoke it's self ya know. When you're done, stroked out, useless to those around you, they'll simply toss you like
yesterdays egg shells and go out and get another one. Shit babe, suckers are born every minute! Or two, anyway. And they're
a dime a dozen, cheaper if ya get 'em wholesale.
Just thinking out loud,
E-dog
Before you work yourself to death, for the sake of your family, you might want to consider this lil' tid bit of sagacity:
YOU ARE NOW PARALYZED!
Give yourself a break, kick back n' relax. Let someone else do a little something for a change.
Maybe the kids could get a paper route. Perhaps dad might try his hand at, oh I don't know, WORKING?
You know, earning a living for his wife and kids?
Hell, if ya want, just get out there an' toil yer lil' self into the grave. While yer at it though, I could use a few bucks myself.
Crack doesn't smoke it's self ya know. When you're done, stroked out, useless to those around you, they'll simply toss you like
yesterdays egg shells and go out and get another one. Shit babe, suckers are born every minute! Or two, anyway. And they're
a dime a dozen, cheaper if ya get 'em wholesale.
Just thinking out loud,
E-dog
when it absolutely, positively, has to be destroyed overnight, call the Marines.
I will nevah, EVAH take a pinch from a greasy muddahf*@kah like you!
How 'bout if I spell it out for ya. D-I-L-L-I-G-A-F
I will nevah, EVAH take a pinch from a greasy muddahf*@kah like you!
How 'bout if I spell it out for ya. D-I-L-L-I-G-A-F
#9
Laura H
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Posted 02 September 2010 - 11:57 PM
E-DOG, on 02 September 2010 - 11:46 PM, said:
Laura,
Before you work yourself to death, for the sake of your family, you might want to consider this lil' tid bit of sagacity:
YOU ARE NOW PARALYZED!
Give yourself a break, kick back n' relax. Let someone else do a little something for a change.
Maybe the kids could get a paper route. Perhaps dad might try his hand at, oh I don't know, WORKING?
You know, earning a living for his wife and kids?
Hell, if ya want, just get out there an' toil yer lil' self into the grave. While yer at it though, I could use a few bucks myself.
Crack doesn't smoke it's self ya know. When you're done, stroked out, useless to those around you, they'll simply toss you like
yesterdays egg shells and go out and get another one. Shit babe, suckers are born every minute! Or two, anyway. And they're
a dime a dozen, cheaper if ya get 'em wholesale.
Just thinking out loud,
E-dog
Before you work yourself to death, for the sake of your family, you might want to consider this lil' tid bit of sagacity:
YOU ARE NOW PARALYZED!
Give yourself a break, kick back n' relax. Let someone else do a little something for a change.
Maybe the kids could get a paper route. Perhaps dad might try his hand at, oh I don't know, WORKING?
You know, earning a living for his wife and kids?
Hell, if ya want, just get out there an' toil yer lil' self into the grave. While yer at it though, I could use a few bucks myself.
Crack doesn't smoke it's self ya know. When you're done, stroked out, useless to those around you, they'll simply toss you like
yesterdays egg shells and go out and get another one. Shit babe, suckers are born every minute! Or two, anyway. And they're
a dime a dozen, cheaper if ya get 'em wholesale.
Just thinking out loud,
E-dog
Thinking out loud may not be a fortay that is all that eloquent. crack is whack. Besides, as a girl scout, I could never sell those danged cookies..never tried anyway..and what I did, I ended up eating in my room...The grave is not that appealing at the moment, just buried grandma. no joking there.
Just trying to hang on and deal...
#10
rue2you
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Posted 03 September 2010 - 01:07 AM
Laura,
Hi, I'm Alicia. Welcome to the forum and you are getting quite an intro by Wheelsonfire and E-Dog. They are two of the craziest on here so don't judge us all by them!!
(I am speaking this in jest - they know I love 'em!)
I am also a wife and mommy to 6 little blessings ages 11 and down. I have been at this for about 18 months now. I know this may sound like a cliche' but really, things do get easier and more "normal". There probably isn't one of us on here who wouldn't enjoy walking again (as well as a return to the invisible parts of paralysis). I am still in outpatient therapy and trying as much as I can, but I also have chosen to enjoy my life whether I ever walk again or not.
Really, my hubby and kids helped me to not bury myself in self-pity. I looked at their faces (especially my children) and decided that their future handling of "trouble" in their lives may very well be determined how I handled my own. So, I decided "Then I am not going there. We will be a happy family even if I am in a wheelchair." I want them to be proud of their momma - not ashamed because I gave up. They deserve a happy childhood and a sweet home. I will give it to them. You see, just that fact alone then gave me purpose. No, I don't keep house like I used too. I don't cook like I used too. I don't do the laundry like I used to. It takes me 2 or 3 times longer to get ready. Things have to be more carefully planned. Their are places that we used to love to go as a family (like touring historical homes, walking in the woods) that we really can't do. But....life goes on and you can choose to make the best of it or not.
I am not fussing at you, I just know what you are going through and trying to encourage you from one mom to another that as long as you have that hubby and son, then you DO have a purpose. If nothing else, you are teaching them by how you react.
Just take it one day at a time. You are still very new at this and it really does take time. Rome wasn't built in a day you know!
Hang in there!
Hi, I'm Alicia. Welcome to the forum and you are getting quite an intro by Wheelsonfire and E-Dog. They are two of the craziest on here so don't judge us all by them!!
(I am speaking this in jest - they know I love 'em!)I am also a wife and mommy to 6 little blessings ages 11 and down. I have been at this for about 18 months now. I know this may sound like a cliche' but really, things do get easier and more "normal". There probably isn't one of us on here who wouldn't enjoy walking again (as well as a return to the invisible parts of paralysis). I am still in outpatient therapy and trying as much as I can, but I also have chosen to enjoy my life whether I ever walk again or not.
Really, my hubby and kids helped me to not bury myself in self-pity. I looked at their faces (especially my children) and decided that their future handling of "trouble" in their lives may very well be determined how I handled my own. So, I decided "Then I am not going there. We will be a happy family even if I am in a wheelchair." I want them to be proud of their momma - not ashamed because I gave up. They deserve a happy childhood and a sweet home. I will give it to them. You see, just that fact alone then gave me purpose. No, I don't keep house like I used too. I don't cook like I used too. I don't do the laundry like I used to. It takes me 2 or 3 times longer to get ready. Things have to be more carefully planned. Their are places that we used to love to go as a family (like touring historical homes, walking in the woods) that we really can't do. But....life goes on and you can choose to make the best of it or not.
I am not fussing at you, I just know what you are going through and trying to encourage you from one mom to another that as long as you have that hubby and son, then you DO have a purpose. If nothing else, you are teaching them by how you react.
Just take it one day at a time. You are still very new at this and it really does take time. Rome wasn't built in a day you know!
Hang in there!
"We cannot choose the road we are asked to travel, but we can choose to enjoy the ride!"
www.aliciareagan.com
www.aliciareagan.com
#11
Laura H
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Posted 03 September 2010 - 02:27 PM
Hey Alicia,
Thanks for the words of encouragement. I think about that, being a mommie, a wife..It is alll just new to me and I am really not sure what the heck I feel like sometimes. I know I am new at this and will figure it out...cannot put out hope in walking but with the ot and pt people saying what they say, the muscles are firing and I have a good chance, at least aided. Can't hang my hat on that though so, Have a lot to figure out.
Your words about your family struck a good cord with me. Like I said, I know I am new at this and I know the fear is natural...I just have been staying home, not getting out...using the slide board to the car and all that stuff..Hubby having to put the wheelchair together and back again after we go somewhere..just seems like so much to ask. I know he loves me and would do anything in the world, he's just a human though. HA HA..they time it and can break it down in 20 seconds..Their goal is 15.
I am a mommie of 1 and he is just the greatest kid..He helps me transfer to the bed like a pro. He is 11 and growing up like a weed.
My hubbie has a lot of patience however this is new to him as well and we both get frustrated, esp when I don't follow the plan that was taught by me in rehab.
gosh, when I first got out, I had plans of going back to work in a month and a half, getting back to life..now I am just not so sure.
I guess that is natural when you are a newbie...
I will respond more lateer. Just want to thank you again for your words...They meant a lot to me and I am taking it in..
Thanks for the words of encouragement. I think about that, being a mommie, a wife..It is alll just new to me and I am really not sure what the heck I feel like sometimes. I know I am new at this and will figure it out...cannot put out hope in walking but with the ot and pt people saying what they say, the muscles are firing and I have a good chance, at least aided. Can't hang my hat on that though so, Have a lot to figure out.
Your words about your family struck a good cord with me. Like I said, I know I am new at this and I know the fear is natural...I just have been staying home, not getting out...using the slide board to the car and all that stuff..Hubby having to put the wheelchair together and back again after we go somewhere..just seems like so much to ask. I know he loves me and would do anything in the world, he's just a human though. HA HA..they time it and can break it down in 20 seconds..Their goal is 15.
I am a mommie of 1 and he is just the greatest kid..He helps me transfer to the bed like a pro. He is 11 and growing up like a weed.
My hubbie has a lot of patience however this is new to him as well and we both get frustrated, esp when I don't follow the plan that was taught by me in rehab.
gosh, when I first got out, I had plans of going back to work in a month and a half, getting back to life..now I am just not so sure.
I guess that is natural when you are a newbie...
I will respond more lateer. Just want to thank you again for your words...They meant a lot to me and I am taking it in..
#12
mellowgator
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Posted 03 September 2010 - 04:56 PM
hi laura h,
welcome to the site. i am also a mother of 2 girls. i had my kids post injury and i find that they give me a sense of purpose. before the children i had a lot of full days before me and i didn't see a reason to get up in the morning. since the kids i feel strong and that i can face anything life throws at me. i know this is all so new. glad you have a great kid and husband. you hang in there this all the uncertainites will work themselves out with time.
mellowgator
welcome to the site. i am also a mother of 2 girls. i had my kids post injury and i find that they give me a sense of purpose. before the children i had a lot of full days before me and i didn't see a reason to get up in the morning. since the kids i feel strong and that i can face anything life throws at me. i know this is all so new. glad you have a great kid and husband. you hang in there this all the uncertainites will work themselves out with time.
mellowgator
hi fellow gimps! i'm a c 6/7 quad and have been injured since 1986. i was in a roll over hydroplane accident and it took hours for the paramedics to get me out of the car in the pouring rain. that definately wasn't my day. but alas life goes on!
#13
rue2you
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Posted 04 September 2010 - 04:10 PM
Laura,
Trust me, I understand every single emotion you are having!! There is such a difference in wife and mommy pre-SCI and wife and mommy after SCI. It completely rocks your world and your system at home! Everything you did before and how you run your home are just extremely different. I could sweep my dining room floor in 5 minutes before and now it takes me 20 minutes (it used to take me way longer than that but now I have it down in 20 and I am proud of my new time record!!) Oh I have my frustrating moments - especially the first 6 months or so. One week, I decided it was all stupid. It took me all day to clean practically nothing and I decided it was pointless and I wasn't even going to try. We could just live in a pig pen. Well, after about 2 days of me kind of sitting around doing nothing and pouting about it all, my sweet hubby (who hardly ever fusses at me about anything) said "What is your problem?" So I told him that it was a stupid waste of time and it was too frustrating and I just didn't have the heart to do it anymore. He told me "Well, that's just too bad. You are not accomplishing anything just sitting around and doing nothing either and I would rather you spend all day trying to do stuff - even if you are never able to fully do it - than to sit around and pout all day. At least you will know that you made good use of your time by trying." Somehow, that really helped me and I saw the common sense of it all.
My hubby and children have never fussed about having to take up some of the extra slack - and they have had to help extra because there really are things that I just can't do efficiently. However, remember this too, I think that especially in the early days, it kind of helps them to cope someway to be able to help. I remember my hubby (at the beginning) crying and telling me that he felt so helpless. That is was his job to protect me and he couldn't protect me from this (SCI) and he felt so utterly helpless. It was very frustrating for him in a whole different perspective. All of us have had to learn to be strong. To realize that our greatest strength is not in our legs, but in our minds and our ability to control our thoughts and attitudes about it all. To decide to love each other, no matter what, and grow closer as a family.
Try hard to be as independent as possible. That will mean failing over and over and over - but eventually you will get better at things. When my hubby will fuss at me for trying things and he will tell me to let him do it, I always say "You will be thankful someday that I try to do all I can" and by that I mean that I know he is willing, but what if things are still like this after 10 or 20 years? The "newness" and novelty will have worn off and I want to do all I can by myself as there will always be "something" that someone will have to help me with - even if it is just reaching something on a high shelf! So, learn and re-learn. You will get frustrated but allow that frustration to morph into the energy and spunk you need to get it and do it yourself!! That fuel is powerful to the human spirit and really will help you more than anything.
Okay, novel closed!
Trust me, I understand every single emotion you are having!! There is such a difference in wife and mommy pre-SCI and wife and mommy after SCI. It completely rocks your world and your system at home! Everything you did before and how you run your home are just extremely different. I could sweep my dining room floor in 5 minutes before and now it takes me 20 minutes (it used to take me way longer than that but now I have it down in 20 and I am proud of my new time record!!) Oh I have my frustrating moments - especially the first 6 months or so. One week, I decided it was all stupid. It took me all day to clean practically nothing and I decided it was pointless and I wasn't even going to try. We could just live in a pig pen. Well, after about 2 days of me kind of sitting around doing nothing and pouting about it all, my sweet hubby (who hardly ever fusses at me about anything) said "What is your problem?" So I told him that it was a stupid waste of time and it was too frustrating and I just didn't have the heart to do it anymore. He told me "Well, that's just too bad. You are not accomplishing anything just sitting around and doing nothing either and I would rather you spend all day trying to do stuff - even if you are never able to fully do it - than to sit around and pout all day. At least you will know that you made good use of your time by trying." Somehow, that really helped me and I saw the common sense of it all.
My hubby and children have never fussed about having to take up some of the extra slack - and they have had to help extra because there really are things that I just can't do efficiently. However, remember this too, I think that especially in the early days, it kind of helps them to cope someway to be able to help. I remember my hubby (at the beginning) crying and telling me that he felt so helpless. That is was his job to protect me and he couldn't protect me from this (SCI) and he felt so utterly helpless. It was very frustrating for him in a whole different perspective. All of us have had to learn to be strong. To realize that our greatest strength is not in our legs, but in our minds and our ability to control our thoughts and attitudes about it all. To decide to love each other, no matter what, and grow closer as a family.
Try hard to be as independent as possible. That will mean failing over and over and over - but eventually you will get better at things. When my hubby will fuss at me for trying things and he will tell me to let him do it, I always say "You will be thankful someday that I try to do all I can" and by that I mean that I know he is willing, but what if things are still like this after 10 or 20 years? The "newness" and novelty will have worn off and I want to do all I can by myself as there will always be "something" that someone will have to help me with - even if it is just reaching something on a high shelf!
So, learn and re-learn. You will get frustrated but allow that frustration to morph into the energy and spunk you need to get it and do it yourself!! That fuel is powerful to the human spirit and really will help you more than anything.Okay, novel closed!
"We cannot choose the road we are asked to travel, but we can choose to enjoy the ride!"
www.aliciareagan.com
www.aliciareagan.com
#15
Laura H
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Posted 05 September 2010 - 10:11 PM
Hey!
Thanks to everyone that has replied..good to know that there are people out there that will and offer the great support and inspiration that you all have..oh, and the humor as well.
I have some big decisions to make about work given the whole wheelchair bit..since I am new at this and the transfers become somewhat scary and I get frustrated with the whole bit, I am thinking maybe I should wait a little before making a decision about disability versus work. That stuff has been on my mind as well. Thankfully I am in a good retirement system but after working my entire life, and enjoying the field, I don't know that I could give it up that easily..without sounding arrogant, there are people on my team saying that if I do not come back then they would leave..... good people who do great work with the mentally ill in the community. But, not their lives I need to be concerned about, it is mine..and right now I need to put on the big girl pants and try more.
Norma, I liked your idea about staying busy and trying to do all that I can around the house..I tried to swiffer sweep just the other day and I tell ya, I missed many, many spots..and yes, the kids and the hubby are the most important thing right now, staying intact as a family. I need to work on my communication with them and to tell them how I am feeling more and to let them tell me. My child, Dylan, sees it as nothing but a thing, always supportive and would make a great PT one day if he wanted. I try too hard for my husband because I want him to see I can do it then make mistakes..falling off the slide board, almost falling to the ground from a car transfer.
After being home for two weeks, this coming week being alone is scaring the crap out of me. I will have people come by and check on me but it is me...how was anyone's first week being alone and new at this? what did you do and how did you manage?
Again, thanks all..any input would be greatly taken into consideration and consumed.
ummmm...maybe not the crack sales...like I said, the girl scout cookies didn't work out well and going into a hole in the ground just isn't me. Not right now anyway.. I get yer point though...
Thanks to everyone that has replied..good to know that there are people out there that will and offer the great support and inspiration that you all have..oh, and the humor as well.
I have some big decisions to make about work given the whole wheelchair bit..since I am new at this and the transfers become somewhat scary and I get frustrated with the whole bit, I am thinking maybe I should wait a little before making a decision about disability versus work. That stuff has been on my mind as well. Thankfully I am in a good retirement system but after working my entire life, and enjoying the field, I don't know that I could give it up that easily..without sounding arrogant, there are people on my team saying that if I do not come back then they would leave..... good people who do great work with the mentally ill in the community. But, not their lives I need to be concerned about, it is mine..and right now I need to put on the big girl pants and try more.
Norma, I liked your idea about staying busy and trying to do all that I can around the house..I tried to swiffer sweep just the other day and I tell ya, I missed many, many spots..and yes, the kids and the hubby are the most important thing right now, staying intact as a family. I need to work on my communication with them and to tell them how I am feeling more and to let them tell me. My child, Dylan, sees it as nothing but a thing, always supportive and would make a great PT one day if he wanted. I try too hard for my husband because I want him to see I can do it then make mistakes..falling off the slide board, almost falling to the ground from a car transfer.
After being home for two weeks, this coming week being alone is scaring the crap out of me. I will have people come by and check on me but it is me...how was anyone's first week being alone and new at this? what did you do and how did you manage?
Again, thanks all..any input would be greatly taken into consideration and consumed.
ummmm...maybe not the crack sales...like I said, the girl scout cookies didn't work out well and going into a hole in the ground just isn't me. Not right now anyway.. I get yer point though...
#16
isobar
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Posted 17 September 2010 - 10:22 AM
Laura H, on 02 September 2010 - 02:55 PM, said:
Hi. I am glad I found this forum. I have been really overwhelmed, fustrated and depressed.
Long story about my spinal cord issues..several surgeries...found I had a chiari malformation that led to cysts, lack of spinal fluid...after 3 weeks of rehab..2 weeks at home, still having problems transferring to/ from the wheelchair. I want to move quickly and know I need to slow it down. I want to walk again and do have movement in my legs even though it is weak and muscles need working out. I cannot stand and am getting home ot and pt right now. I have worked all my life in the mental health field and feel like I am useless. I worry that my lack of working is going to ruin my family however I do have every hope of returning to work maybe in a month or so.. I don't know if it is realistic or not...
as you can see from these loose associations, I have a lot on my mind and really looking for someone that would just talk.
Thanks for allowing me on the site. I think it can be a great source for me. I just need to get my brain in order and try to figure things out before i burn out my husband and son...like I said, I feel very new at this and fustrated.....help
Long story about my spinal cord issues..several surgeries...found I had a chiari malformation that led to cysts, lack of spinal fluid...after 3 weeks of rehab..2 weeks at home, still having problems transferring to/ from the wheelchair. I want to move quickly and know I need to slow it down. I want to walk again and do have movement in my legs even though it is weak and muscles need working out. I cannot stand and am getting home ot and pt right now. I have worked all my life in the mental health field and feel like I am useless. I worry that my lack of working is going to ruin my family however I do have every hope of returning to work maybe in a month or so.. I don't know if it is realistic or not...
as you can see from these loose associations, I have a lot on my mind and really looking for someone that would just talk.
Thanks for allowing me on the site. I think it can be a great source for me. I just need to get my brain in order and try to figure things out before i burn out my husband and son...like I said, I feel very new at this and fustrated.....help
this is a big adjustment for you. Take it day by day you'll have highs and lows
thats expected. Dont put pressure on yourself only makes you stressed and dejected.
Your family loves and are there for you. Love is a powerful and beautiful thing we
all need. You're alive so your life has purpose sometimes its in front of you, some-
times its not. You'll find your way in time. Focus on what you can do not so much on
what you cant do. Cant does drain will, resolve and determination. If you need to cry then
do so. I've cried tears of joy and pain they both helped when my cry was over i wiped my
face and moved on. You may not have a choice about being paralyzed but you can determin-
e how you live your life. It takes courage to live, to persevere. The other mothers in
here can be great support, an anchor. Seeing them do it lets you know it's possible and
within your grasp. They share your ordeal and have been where you need to get. My situ-
ation is different from yours i sensed despair in your words so i reached out. I hope
you walk again. I'm not trying to hinder... i'm trying to help. "Life is the ultimate
teacher."
LITUT = "Life Is The Ultimate Teacher"
#17
roo
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Posted 17 September 2010 - 10:59 AM
HI LAURA H,AND WELCOME TO THE SITE YOU SEEM HEAD STRONG SO HAD SAY YOU ARE HALF WAY THERE ALREADY.I HAVE BEEN IN A WHEELCHAIR NOW 23 YRS ,LIFE STUCKS ,YOU ONLY GET 1 HAND AT THIS LIFE SO MAKE THE MOST OF IT ,,HAS YOU LOOK ROUND THE CORNER YOU WILL SEE SOME1 WORSE THAN YOURSELF .
BEST OF LUCK WITH THE REHAB
BEST OF LUCK WITH THE REHAB
#18
pinkcloud
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Posted 17 September 2010 - 11:47 AM
Hi Laura
PATIENCE. That sounds like what you may well do with learning. I am reminded of meself at five weeks post operation - heck I discharged meself from the horrid hospital and moved house - decided to came of morphine,tramadol, etc etc.... then I learnt I had to slow down before I burnt meself out.
As to the family, ya need to get used to yourself in this new world of SCI. And ya family will have to too. Theres no other option but to. This is who you are now.
Friends may disapear - hard way to learn that people we like are not whom we thought they were. But there is never a nice way to learn this. And all you can do is move on. Its the past. Theres no time machines. If we keep running away from ourselves - then others will run away from us too.
oooo and another thing, yeah me too is a great worker, and yeah I miss it like mad. However, now is the time to look after yaself as you do others. And guess what.... it works. I love my life again. Its harder and painful and slower pace than before but thats me - and I am so glad I have got me smile back
PATIENCE. That sounds like what you may well do with learning. I am reminded of meself at five weeks post operation - heck I discharged meself from the horrid hospital and moved house - decided to came of morphine,tramadol, etc etc.... then I learnt I had to slow down before I burnt meself out.
As to the family, ya need to get used to yourself in this new world of SCI. And ya family will have to too. Theres no other option but to. This is who you are now.
Friends may disapear - hard way to learn that people we like are not whom we thought they were. But there is never a nice way to learn this. And all you can do is move on. Its the past. Theres no time machines. If we keep running away from ourselves - then others will run away from us too.
oooo and another thing, yeah me too is a great worker, and yeah I miss it like mad. However, now is the time to look after yaself as you do others. And guess what.... it works. I love my life again. Its harder and painful and slower pace than before but thats me - and I am so glad I have got me smile back
#19
Laura H
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Posted 22 September 2010 - 07:44 PM
Hey all,
Thanks for the replies. I am still going through the newness of it. I hate the boring day to day. My butt hurts and seems like the only choices i have are wheelchair and bed, wheelchair and bed. been looking for a better cushion for the chair but am not sure which one would be best since I am stuck in this thing for now. If I got a Roho then I have a kitten with claws that would probably ruin it..
anyway, got off the subject. I think I am doing some better. Had my first accident in the chair yesterday, peed all over myself. Thankfully I had someone here to help. I am doing better with the shower jig..with the help of my husband. The toilet thing is still an issue. I cannot get on or off it by myself..with my bowel and bladder program I do the enema every night...ugggh..I dread the shower and the toilet..dread them. I feel I don't get enough out and trying to decrease my diet to not gain weight in my belly as well...eating but not so much.
There is just so much to learn. I am afraid of going out because of having accidents. I do try once a week to go with hubby and son to their fav. place to eat..we go at a specific time so I can get back and not have an accident.
When I do go out, I do end up having a good time but the nagging feeling of having the accidents worries me. I do not want to ruin the seat in my charger with pee
THEN there is the issue of my cord swelling again..it has been swelling, calling doc. for steroids and such..wasn't swollen in the rehab. unit but I was on injections then. I worry more is wrong with me and doc. said there is nothing else he can do. I go back on the 29th. I feel it swells more when I am in the chair so I lay down about 4 hours a day, mid day. I am up at 6a and go to bed around 9:30..usually because I cannot take the chair anymore..torture chamber.
Just wanted to give an update...for the loose associations that they are...my mind goes pretty much everywhere these days. I love seeing my husband and my son at the end of the day..that keeps me going...supposed to start outpatient therapy next week..wondering how that will work out..
Thanks for the replies. I am still going through the newness of it. I hate the boring day to day. My butt hurts and seems like the only choices i have are wheelchair and bed, wheelchair and bed. been looking for a better cushion for the chair but am not sure which one would be best since I am stuck in this thing for now. If I got a Roho then I have a kitten with claws that would probably ruin it..
anyway, got off the subject. I think I am doing some better. Had my first accident in the chair yesterday, peed all over myself. Thankfully I had someone here to help. I am doing better with the shower jig..with the help of my husband. The toilet thing is still an issue. I cannot get on or off it by myself..with my bowel and bladder program I do the enema every night...ugggh..I dread the shower and the toilet..dread them. I feel I don't get enough out and trying to decrease my diet to not gain weight in my belly as well...eating but not so much.
There is just so much to learn. I am afraid of going out because of having accidents. I do try once a week to go with hubby and son to their fav. place to eat..we go at a specific time so I can get back and not have an accident.
When I do go out, I do end up having a good time but the nagging feeling of having the accidents worries me. I do not want to ruin the seat in my charger with pee
THEN there is the issue of my cord swelling again..it has been swelling, calling doc. for steroids and such..wasn't swollen in the rehab. unit but I was on injections then. I worry more is wrong with me and doc. said there is nothing else he can do. I go back on the 29th. I feel it swells more when I am in the chair so I lay down about 4 hours a day, mid day. I am up at 6a and go to bed around 9:30..usually because I cannot take the chair anymore..torture chamber.
Just wanted to give an update...for the loose associations that they are...my mind goes pretty much everywhere these days. I love seeing my husband and my son at the end of the day..that keeps me going...supposed to start outpatient therapy next week..wondering how that will work out..
#20
mellowgator
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Posted 22 September 2010 - 09:03 PM
hi laura h,
.
you may want to try doing your bowel routine every other day. i wouldn't take the stool softners or other laxative type stuff because it can cause accidents. you may want to try enemeez because it's so much quicker than supposotories. i find it much easier to have formed stool it's so much easier to remove than pudding.
i also use a cushion that could withstand puncture from your cat. i use the honeycomb cushion from stimulite. i love it and if you have an accident you can clean it and dry it in minutes. no gel no air. it's only good for if are under 200 lbs however.
i know your post hit on many items but these are the 2 that stood out in my mind.
best wishes,
mellowgator
.
you may want to try doing your bowel routine every other day. i wouldn't take the stool softners or other laxative type stuff because it can cause accidents. you may want to try enemeez because it's so much quicker than supposotories. i find it much easier to have formed stool it's so much easier to remove than pudding.
i also use a cushion that could withstand puncture from your cat. i use the honeycomb cushion from stimulite. i love it and if you have an accident you can clean it and dry it in minutes. no gel no air. it's only good for if are under 200 lbs however.
i know your post hit on many items but these are the 2 that stood out in my mind.
best wishes,
mellowgator
hi fellow gimps! i'm a c 6/7 quad and have been injured since 1986. i was in a roll over hydroplane accident and it took hours for the paramedics to get me out of the car in the pouring rain. that definately wasn't my day. but alas life goes on!
#21
Laura H
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Posted 23 September 2010 - 01:51 AM
Hey mellowgator,
the simulite cushion, how high does it sit? I am using the one rehab provided...it has a J on it but doesn't really say what the heck it is. I just know it has the formed butt thingie on the back I am supposed to put my butt on and it really, really gets to me. I don't think they spent enough time discussing cushions and such..none acutally..I am worried about sitting too high because the swelling in my cord is not allowing me to have very good trunk control right now. I think my cushion is 2-3 inches high..dang thing is, it is a loaner and I called the company today about the friggin foot pedal and they could not find me in the computer..and they have been out here twice..go figure..drives me nuts. I will call again tomorrow and then talk to the tech. about the cushion. I have been doing research on this stuff and get a little overwhelmed. I worry about the pressure sores and such. Reading this site and some of the stories just scare the heck out of me. I know, I need to live day by day and everyone is different, eh?
I will look into the simulite cushion..If I can stand the chair maybe I can feel better and do more..Just FYI. I have really enjoyed some of your other posts. You can be so optimistic and provide good mentoring for us new ones that are really having difficulties adjusting.
the simulite cushion, how high does it sit? I am using the one rehab provided...it has a J on it but doesn't really say what the heck it is. I just know it has the formed butt thingie on the back I am supposed to put my butt on and it really, really gets to me. I don't think they spent enough time discussing cushions and such..none acutally..I am worried about sitting too high because the swelling in my cord is not allowing me to have very good trunk control right now. I think my cushion is 2-3 inches high..dang thing is, it is a loaner and I called the company today about the friggin foot pedal and they could not find me in the computer..and they have been out here twice..go figure..drives me nuts. I will call again tomorrow and then talk to the tech. about the cushion. I have been doing research on this stuff and get a little overwhelmed. I worry about the pressure sores and such. Reading this site and some of the stories just scare the heck out of me. I know, I need to live day by day and everyone is different, eh?
I will look into the simulite cushion..If I can stand the chair maybe I can feel better and do more..Just FYI. I have really enjoyed some of your other posts. You can be so optimistic and provide good mentoring for us new ones that are really having difficulties adjusting.
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