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This post has been edited by missb: 28 August 2006 - 11:56 PM
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3 Weeks Exactly...
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#1
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Posted 26 February 2006 - 01:33 AM
Cheers
#2
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Posted 26 February 2006 - 02:03 AM
Hi
I've just found this site, yesterday to be exact and I have replied to and set up a few topics, read through anything with mttb14 attached to it, and I've been expressing my feelings all day.
Love is a great help, my husband of 2 1/2 years has C5 and C6 spinal cord damage, it happened in 1998 but for us it has got progressively worse, he was lifting boards in work and he felt his neck pop. What he really needs is you to be positive and to ask all the questions he is to scared to ask, and then you can talk about it. John makes me feel totally inadequate on times and other times he makes me want to scream, but we have learnt to love, laugh and enjoy each others company, it has made us far closer in lots of ways. We were only living together a few months before it happened, but you live and learn together, and it really teaches you what is important.
Try to be positive, he is still alive and so are you, anything else you can deal with, as people we are designed to deal with situations, and you both will. Right now even though he probably won't admit it, he needs to know you still love him and that you are going to be there for him, but only promise it if you mean it.
He will feel useless, John oftens asks me to have him put down when he is in constant chronic pain, but somehow or another you get by. The funny thing is when you feel like life isn't worth living, you see someone worse off than you and you think well maybe it isn't so bad, even though right now you don't seem to be able to imagine that at the moment. You must talk to one another though, otherwise if you isolate from one another, both too scared to speak you will find it hard to pull back together.
I have days where I still feel like crying and so does John, but most of what you will read here will show you the positive side of how people deal with things, unfortunately, these things always seem to happen to hard working people, so not being able to work is depressing for them and so is anger at the situation they find themselves in, and they always take it out on those they love, so if he is being horrid to you, it means you are the one he loves and trusts even though it feels as if he is pushing you away.
If you need to talk, I will be logging on most days as this is now going to be my lifeline, something I've needed for a long time.
I've just found this site, yesterday to be exact and I have replied to and set up a few topics, read through anything with mttb14 attached to it, and I've been expressing my feelings all day.
Love is a great help, my husband of 2 1/2 years has C5 and C6 spinal cord damage, it happened in 1998 but for us it has got progressively worse, he was lifting boards in work and he felt his neck pop. What he really needs is you to be positive and to ask all the questions he is to scared to ask, and then you can talk about it. John makes me feel totally inadequate on times and other times he makes me want to scream, but we have learnt to love, laugh and enjoy each others company, it has made us far closer in lots of ways. We were only living together a few months before it happened, but you live and learn together, and it really teaches you what is important.
Try to be positive, he is still alive and so are you, anything else you can deal with, as people we are designed to deal with situations, and you both will. Right now even though he probably won't admit it, he needs to know you still love him and that you are going to be there for him, but only promise it if you mean it.
He will feel useless, John oftens asks me to have him put down when he is in constant chronic pain, but somehow or another you get by. The funny thing is when you feel like life isn't worth living, you see someone worse off than you and you think well maybe it isn't so bad, even though right now you don't seem to be able to imagine that at the moment. You must talk to one another though, otherwise if you isolate from one another, both too scared to speak you will find it hard to pull back together.
I have days where I still feel like crying and so does John, but most of what you will read here will show you the positive side of how people deal with things, unfortunately, these things always seem to happen to hard working people, so not being able to work is depressing for them and so is anger at the situation they find themselves in, and they always take it out on those they love, so if he is being horrid to you, it means you are the one he loves and trusts even though it feels as if he is pushing you away.
If you need to talk, I will be logging on most days as this is now going to be my lifeline, something I've needed for a long time.
Wife of an incomplete SCI - level C5/6 - accident lifting boards above his head in work caused popping sensation in his neck and this was the result. He uses a wheelchair part of the time.
Never say never, and definately do not quit, its usually worth the trying in the end.
Never say never, and definately do not quit, its usually worth the trying in the end.
#3 *onion*
Posted 26 February 2006 - 02:59 AM
hi missb,
There are two things I learned along the way. Any early improvement is great news. The first year is critical. But improvement can happen over many years. The other thing I learned is that compression fracture usually means fussion. The bones from c6 and c7 are fussed together thereby decompressing the central canal. I feel uncomfortable offering this kind of information, for everyone's case is different. I hope he's out of ICU soon. I suffered the lack of eye contact for awhile. There is just a tremendous amount of emotions flowing. And men are from mars and women from venus. What you are doing is very positive. Your here, your with us, we'll listen. And hopefully we can help. hang in there missb
There are two things I learned along the way. Any early improvement is great news. The first year is critical. But improvement can happen over many years. The other thing I learned is that compression fracture usually means fussion. The bones from c6 and c7 are fussed together thereby decompressing the central canal. I feel uncomfortable offering this kind of information, for everyone's case is different. I hope he's out of ICU soon. I suffered the lack of eye contact for awhile. There is just a tremendous amount of emotions flowing. And men are from mars and women from venus. What you are doing is very positive. Your here, your with us, we'll listen. And hopefully we can help. hang in there missb
#4
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Posted 27 February 2006 - 05:49 AM
Hi Missb and mttb14....welcome to the board...
You will meet all sorts of people here and we all have something in common.... we either are disabled in some shape or form, or are close to someone who is disabled. So someone somewhere will be able to relate to what you are going through. We all have good ears!
Missb....3 weeks is a very short time since the accident. You both have a long way to go yet....give each other and your own selves time to adjust, have a good read through the posts here...you will find all sorts of things and meet some fantastic people. Dont be afraid to ask questions or talk when you need to. With regard to the feeling in your mans hands....no one can really tell as everybodys injuries are different, but I hear that things can improve and change for a couple of years following the injury....so dont give up yet!
I look forward to talking to you both....
You will meet all sorts of people here and we all have something in common.... we either are disabled in some shape or form, or are close to someone who is disabled. So someone somewhere will be able to relate to what you are going through. We all have good ears!
Missb....3 weeks is a very short time since the accident. You both have a long way to go yet....give each other and your own selves time to adjust, have a good read through the posts here...you will find all sorts of things and meet some fantastic people. Dont be afraid to ask questions or talk when you need to. With regard to the feeling in your mans hands....no one can really tell as everybodys injuries are different, but I hear that things can improve and change for a couple of years following the injury....so dont give up yet!
I look forward to talking to you both....
#5
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Posted 27 February 2006 - 09:09 AM
Hi Jilly and missb,
I agree with what Jilly has said, when John felt his neck go pop he only thought he had pulled a muscle, turns out after 1 1/2 years of doctors visits he had damaged 2 discs, c5 and c6.
He has got steadily worse but his problems are mostly chronic pain, he had an operation on the discs, and his hand and arm went numb, it has taken 3 1/2 years but he has most of that feeling back now, but the more pain he is in the less feeling he has, so he has good days and bad.
He also has a problem where if he cannot see things, or something unexpected is in his way, his signals to his brain via his eyes, don't get the message to his feet quick enough, so he falls over. Infact yesterday, he fell over and hurt his hip or top of the leg, so today we are hospital bound to find out what is happening, has he broken anything or just bruized it?
All we can say is hang on in there, you are both in shock and there will probably have quite a few more along the way, but you are both the same people, you've just got a damaged shell. If you think you feel angry, upset or whatever other emotions are welling up, let them out. It is easier for you as he is in hospital surrounded by strangers, he will be crying inside, angry inside and mostly so very very scared, after all you get times when you can walk away, he is stuck with whatever injuries he has, he cannot leave them in one room and go to another. I know it is hard, but if you really love him, not just the times you had together, this will really test your loyalty, but do not stay out of pity only true love as this will have a big impact on both of your futures.
I grew up with my dad having an accident 75% disabled, but always determined to walk right to the bitter end and he refused a wheelchair, when I was 6 and my brother was 4 and then John had his when I was 31. I've done the screaming how unfair is this, but it makes you realise the important things in life and you do manage because that is the only choice you have.
As I said before, tell one another you love each other, give each other cuddles and just stroking his skin if you cannot hold his hand, shows him you still love him and are not repulsed by what you see, which is another fear he will have.
Read the letter on this site to people without chronic pain, it is so so true and gives you an insight into exactly how they feel.
Just to show you can laugh in the face of adversity, when my dad was in hospital after his accident, he broke just about every bone you can down the right side of his body, he received an envelope with a black cross on it and a verse out of the bible printed on it. He looked at the letter and thought my mum had tried to claim the life policy while he was still alive, he was going bonkers and he hadn't even opened it, by the time he had calmed down and did open it, it was from the vicar in our village who was offering to talk to him should he feel the need.
Speak to you later.
Maria
I agree with what Jilly has said, when John felt his neck go pop he only thought he had pulled a muscle, turns out after 1 1/2 years of doctors visits he had damaged 2 discs, c5 and c6.
He has got steadily worse but his problems are mostly chronic pain, he had an operation on the discs, and his hand and arm went numb, it has taken 3 1/2 years but he has most of that feeling back now, but the more pain he is in the less feeling he has, so he has good days and bad.
He also has a problem where if he cannot see things, or something unexpected is in his way, his signals to his brain via his eyes, don't get the message to his feet quick enough, so he falls over. Infact yesterday, he fell over and hurt his hip or top of the leg, so today we are hospital bound to find out what is happening, has he broken anything or just bruized it?
All we can say is hang on in there, you are both in shock and there will probably have quite a few more along the way, but you are both the same people, you've just got a damaged shell. If you think you feel angry, upset or whatever other emotions are welling up, let them out. It is easier for you as he is in hospital surrounded by strangers, he will be crying inside, angry inside and mostly so very very scared, after all you get times when you can walk away, he is stuck with whatever injuries he has, he cannot leave them in one room and go to another. I know it is hard, but if you really love him, not just the times you had together, this will really test your loyalty, but do not stay out of pity only true love as this will have a big impact on both of your futures.
I grew up with my dad having an accident 75% disabled, but always determined to walk right to the bitter end and he refused a wheelchair, when I was 6 and my brother was 4 and then John had his when I was 31. I've done the screaming how unfair is this, but it makes you realise the important things in life and you do manage because that is the only choice you have.
As I said before, tell one another you love each other, give each other cuddles and just stroking his skin if you cannot hold his hand, shows him you still love him and are not repulsed by what you see, which is another fear he will have.
Read the letter on this site to people without chronic pain, it is so so true and gives you an insight into exactly how they feel.
Just to show you can laugh in the face of adversity, when my dad was in hospital after his accident, he broke just about every bone you can down the right side of his body, he received an envelope with a black cross on it and a verse out of the bible printed on it. He looked at the letter and thought my mum had tried to claim the life policy while he was still alive, he was going bonkers and he hadn't even opened it, by the time he had calmed down and did open it, it was from the vicar in our village who was offering to talk to him should he feel the need.
Speak to you later.
Maria
Wife of an incomplete SCI - level C5/6 - accident lifting boards above his head in work caused popping sensation in his neck and this was the result. He uses a wheelchair part of the time.
Never say never, and definately do not quit, its usually worth the trying in the end.
Never say never, and definately do not quit, its usually worth the trying in the end.
#6
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Posted 27 February 2006 - 03:13 PM
My husband broke his neck at c5 last summer when he was only 22 and i was 23 so I can relate to how scared you are for the future. He's still in rehab and gets stronger everyday. He hasn't done the anger, not speaking to me stuff very often, I think he'll wait until we're home and alone for that, which is going to suck.
The way I get through this is to take it one day at a time, which is way easier said than done, and do the best that you can. Everything will work out the way it's supposed to.
The way I get through this is to take it one day at a time, which is way easier said than done, and do the best that you can. Everything will work out the way it's supposed to.
#7
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Posted 28 February 2006 - 03:29 AM
Even after many years they can still have the anger thing.....My guy has extremely sore shoulder and upper arm muscles at the moment.... the silly idiot dug a whole lot of plants out of the garden and piled them on the driveway! That was last week and he is still like a bear with a sore head! He got me upset the other day through snapping at me constantly and now has the guilts 
but is still grumpy! (I got a lovely apology) 
I know Im not doing anything wrong and that its because hes in a lot of pain. Youve got to try to let it bounce off and know that its not really you they are mad at but they have to let it out sometime.....unfortunately its usually their nearest and dearest that cop it!
but is still grumpy! (I got a lovely apology) I know Im not doing anything wrong and that its because hes in a lot of pain. Youve got to try to let it bounce off and know that its not really you they are mad at but they have to let it out sometime.....unfortunately its usually their nearest and dearest that cop it!
#8
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Posted 28 February 2006 - 11:23 AM
Hi everyone, thanks for you insights.. they have been really usefull.
My boyfriend is still on supported breathing, but the outlook is looking good and I have a feeling that he will be able to have a cap on his trachy soon and he will be able to talk again.
I'm still coming to terms with the whole thing, we were moving in together next month and he always told me to keep my wedding finger free married and when I finish my nursing course.. go for children! I am determined that the things that we planned will still happen, a love that I have for him- I'm sure only comes along once in a lifetime and I will give it my all (luckily I know what I can apply for and the care I can give with my nurse training) to make sure we have a brilliant life together... now with added extra of a wheelchair!
I do mourn, I mourn the happy life that I had. If my life was put on a scale of happy-go-lucky types it would have been the life that me and my boyfriend had. Without a doubt. I was looking forward to so much, but also enjoying every moment. I get angry at people, at the situation and at the gods for doing this.
But as I write this now, I know that it was pure human error that did this. Health and Safety officers had been to my boyfriends employers and told them to stop stacking the pallets on top of each other as there was not an adequete support system to do this safely. But twice this was ignored. My boyfriends memory has come back and he can remember being hit on the back of the head. Obviously he can not say much as he is on ventilated breathing- but he does give it a shot and gets pissed with me for thinking he says custard when he is actually saying comfy! I'm getting there!
I work everyday on his hands and arms... I like to think that I have helped him gain a kickass thumb for changing the channel on his tv and this weeks plan is to get the other thumb going so I can bring in his playstation to pass the time rather than watching rubbish daytime TV- his words not mine!
He is a gentle man, the nurses and the doctors are really taken with him.. he makes no demands except for comfort and company. I hope that others understand this when I say.. that the fact that he does take it out on me is a positive sign for us... he does feel comfortable enough to be himself around me. He knows I am not repulsed by what I see.. I hug him and kiss him and stroke his neck when we are watching tv and I promote for him to do the same with me, I am his lady afterall! The man i love is very much still with me and I intend to keep his self-dignity and self-worth at its maximum. Sex, bladder care, bowel care is all going to be kept as independant and maximised by me and him.. I would not have it any other way. We are still getting married, he told me to buy a ring the other day- and from this month of hell... he owes me a bleeding good one!
Hope to hear from you all soon....
Miss B x x x
My boyfriend is still on supported breathing, but the outlook is looking good and I have a feeling that he will be able to have a cap on his trachy soon and he will be able to talk again.
I'm still coming to terms with the whole thing, we were moving in together next month and he always told me to keep my wedding finger free married and when I finish my nursing course.. go for children! I am determined that the things that we planned will still happen, a love that I have for him- I'm sure only comes along once in a lifetime and I will give it my all (luckily I know what I can apply for and the care I can give with my nurse training) to make sure we have a brilliant life together... now with added extra of a wheelchair!
I do mourn, I mourn the happy life that I had. If my life was put on a scale of happy-go-lucky types it would have been the life that me and my boyfriend had. Without a doubt. I was looking forward to so much, but also enjoying every moment. I get angry at people, at the situation and at the gods for doing this.
But as I write this now, I know that it was pure human error that did this. Health and Safety officers had been to my boyfriends employers and told them to stop stacking the pallets on top of each other as there was not an adequete support system to do this safely. But twice this was ignored. My boyfriends memory has come back and he can remember being hit on the back of the head. Obviously he can not say much as he is on ventilated breathing- but he does give it a shot and gets pissed with me for thinking he says custard when he is actually saying comfy! I'm getting there!
I work everyday on his hands and arms... I like to think that I have helped him gain a kickass thumb for changing the channel on his tv and this weeks plan is to get the other thumb going so I can bring in his playstation to pass the time rather than watching rubbish daytime TV- his words not mine!
He is a gentle man, the nurses and the doctors are really taken with him.. he makes no demands except for comfort and company. I hope that others understand this when I say.. that the fact that he does take it out on me is a positive sign for us... he does feel comfortable enough to be himself around me. He knows I am not repulsed by what I see.. I hug him and kiss him and stroke his neck when we are watching tv and I promote for him to do the same with me, I am his lady afterall! The man i love is very much still with me and I intend to keep his self-dignity and self-worth at its maximum. Sex, bladder care, bowel care is all going to be kept as independant and maximised by me and him.. I would not have it any other way. We are still getting married, he told me to buy a ring the other day- and from this month of hell... he owes me a bleeding good one!
Hope to hear from you all soon....
Miss B x x x
This post has been edited by missb: 28 February 2006 - 11:27 AM
#9
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Posted 28 February 2006 - 04:34 PM
Hi Missb & Jilly,
Well you do sound more positive this time, believe me you can still have good days, laugh and love, but be ready for the bad ones, because having your head snapped off when you have not done anything wrong is a major downer.
You know the reasoning behind it, but still it makes you feel like crying. Apologies are usually good though. We had to see a psychiatrist today, and I really don't think he crasped chronic pain at all. John tries to do things, change a plug, hold a phone, read a magazine, cut the grass, carry a light box of goods etc etc etc, then low and behold he is in absolute agony for days and sometimes weeks. Problem is strength is still there, but crossed signals from brain to spinal cord and nerves say, it is hurting and by god it hurts. His tendons tighten in arms and legs and he has cried on numerous occasions with the pain, but he is a man, and he thinks he should still do the jobs a man does. When he was able I had to nag him to do them, now I have to nag him not to do them. This is a really weird exsistence, but it is the strength and determination that gets you through.
The psychiatrist said try not to worry, it might not get any worse, but it has each year so far, and this year it has got worse each month, the problem is they aren't living it, they go home and forget about it, we live it.
I think there should be medals awarded for people who have to deal with chronic pain, John was a super fit male before this happened who lived to work, now he tries to still work a few hours a week just to say he works, nobody seems to understand this, they say why don't you just go on the sick, because he doesn't want to, he wants to still have his self worth. Why can't the doctors etc cheer him on and say how impressed they are, they think if he is well enough to work then he cannot be hurting as much as he says he is.
Our solicitor said yesterday, never mind it is nearly over now and then you can put the whole nightmare behind you. I told him I didn't know what planet he was on, but the only thing that would end when the Court case is finally over is having to speak to him, barresters, etc etc etc, this won't go away, this nightmare is our lives, he was quite taken back at this comment, if I sound angry today, it is because I am. Totally cheesed off with stupid comments like it is nearly over, for them yes, us no, there could be another 40 or 50 years like this.
All I can say is thank god for this site, where did I vent my anger before, oh yes I screamed into the pillow.
Speak to you later
Maria
Well you do sound more positive this time, believe me you can still have good days, laugh and love, but be ready for the bad ones, because having your head snapped off when you have not done anything wrong is a major downer.
You know the reasoning behind it, but still it makes you feel like crying. Apologies are usually good though. We had to see a psychiatrist today, and I really don't think he crasped chronic pain at all. John tries to do things, change a plug, hold a phone, read a magazine, cut the grass, carry a light box of goods etc etc etc, then low and behold he is in absolute agony for days and sometimes weeks. Problem is strength is still there, but crossed signals from brain to spinal cord and nerves say, it is hurting and by god it hurts. His tendons tighten in arms and legs and he has cried on numerous occasions with the pain, but he is a man, and he thinks he should still do the jobs a man does. When he was able I had to nag him to do them, now I have to nag him not to do them. This is a really weird exsistence, but it is the strength and determination that gets you through.
The psychiatrist said try not to worry, it might not get any worse, but it has each year so far, and this year it has got worse each month, the problem is they aren't living it, they go home and forget about it, we live it.
I think there should be medals awarded for people who have to deal with chronic pain, John was a super fit male before this happened who lived to work, now he tries to still work a few hours a week just to say he works, nobody seems to understand this, they say why don't you just go on the sick, because he doesn't want to, he wants to still have his self worth. Why can't the doctors etc cheer him on and say how impressed they are, they think if he is well enough to work then he cannot be hurting as much as he says he is.
Our solicitor said yesterday, never mind it is nearly over now and then you can put the whole nightmare behind you. I told him I didn't know what planet he was on, but the only thing that would end when the Court case is finally over is having to speak to him, barresters, etc etc etc, this won't go away, this nightmare is our lives, he was quite taken back at this comment, if I sound angry today, it is because I am. Totally cheesed off with stupid comments like it is nearly over, for them yes, us no, there could be another 40 or 50 years like this.
All I can say is thank god for this site, where did I vent my anger before, oh yes I screamed into the pillow.
Speak to you later
Maria
Wife of an incomplete SCI - level C5/6 - accident lifting boards above his head in work caused popping sensation in his neck and this was the result. He uses a wheelchair part of the time.
Never say never, and definately do not quit, its usually worth the trying in the end.
Never say never, and definately do not quit, its usually worth the trying in the end.
#10
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Posted 28 February 2006 - 06:59 PM
Quote
Our solicitor said yesterday, never mind it is nearly over now and then you can put the whole nightmare behind you. I told him I didn't know what planet he was on
Well, he really wasn't thinking, was he? I'm glad you commented on it, because he really needs to know that this isn't an appropriate response to someone with a SCI or any other life-long condition, for that matter. I'm sure he was just spouting off cliches without thinking, but you've raised his awareness now, so perhaps he'll be more careful in choosing his words from now on.missb....
Blessings to you and your partner as you go through this challenging time. It's true...there will be joy again...remain by his side in support and continue to give and receive love.
Baby steps...baby steps. Oh yeah....and don't forget to breathe!
This post has been edited by Joed: 28 February 2006 - 07:06 PM
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Female. Incomplete para following a cord stroke in '03. Spina-bifida, severe scoliosis. 18 surgeries total...five spine-related: Three fusions w/hardware, two tethered cord releases.
Female. Incomplete para following a cord stroke in '03. Spina-bifida, severe scoliosis. 18 surgeries total...five spine-related: Three fusions w/hardware, two tethered cord releases.
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