Help
This is a first for me so please forgive me if I ramble on. I am hoping to connect with anyone that is going through the same experience as myself. I have reached a rough spot in dealing with this whole SCI (spouse) and not sure where to go from here. So here is a little background and hopefully it will sound familiar to someone out there.
My husband and I have been married for 11 years and together as a couple for 15years. We have to wonderful children age 8 and 6. 1 1/2 years ago my husband became paralysed while mountain biking. For the first 12 months things seem to be going okay in terms of coping with the life change on both ends. We have moved 3 times in a year searching for a home that will suit outr needs. We have now decided to build which will take about a year.
So here is my deal.. about three months ago I think the reality of our situation started to set in and as a result I have been having more and more feelings of unhappiness and a sense of "can I do this for the rest of my life" I hate thinking this way as it makes me feel and sound so shallow. I love my husband for who he is and for a year I would tell people that he is still the same person just in a different package. Okay so the reality is..... he has changed and so have I. Even our children have changed (personality wise) over this past year. There doesn't seem to be the same kind of laughter in our home as once was and this makes me so sad. I won't waste anyones time going into detail of things that are troubling me at this time but I do hope that someone can tell me that they know what I am feeling and that it is normal and maybe some ideas of how to move forward and make a happy life for all of us involved.
Enough rambling... sorry!!!! Like I said this is a first for me. thanks for listening!
Hope (JLH)
P.S. Sorry for spelling mistakes... not my strong suit
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#2
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Posted 23 January 2007 - 07:46 AM
Hello Hope...welcome to the forum, u have indeed come to the right place. Here you will get all the ans to your questions and ears to listen and most of all friends who share in all you are going thru. Sorry to hear abt your hubby's accident and the various changes that you have to cope with since this happened. Its not easy and especially the first months after the accident. These thuts do crop up from time to time 'will i manage this? will i have to do this for the rest of my life? will i get back my life? do my friends understand?what effect will it have on the kids? - these and many more questions are the norm for everyone going thru sci...there is nothing wrong with asking those questions. Hope, u have to take one day at a time, yes things have changed but do you have to stop living because of that? does the laughter have to disappear from your household b'cse of that? No. You say you love your hubby....then lay every single detail on the table...learn to talk abt the issues bothering you together, he knows things have changed but wont know how much until you do bring it out instead of lettig it eat you up....the kids need to see life going on, they dont have to sense the changes just becasue dad is sick...its up to you to make things work. Go on, give it a shot and you will be surprised at what your positive outlook will have on your life and that of your family. Am not saying everyday will be easy, naaa, but it will be an everyday learning experience and after you give it your best then you will be able to answer your own question 'will i have to do this for the rest of my life' but all in all.....i wish you the best as you try to live again. Gudluck 
#3
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Posted 23 January 2007 - 12:14 PM
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Hi how are you, i can totally understand where your coming from and i do have those feeling to, from what i undertand its normal, but it still hurts, and is worrying. im 24 and have been with my fiancee for 3 years he is a c6 quadriplegic. aswell as being a fiancee i am also his primary carer, we have just built a house to!!!. its so hard trying to put a line so to speak between the carer and the fiancee responsibilities, i have days where i feel i cant do this but what keeps me going is the fact that he has to do it and that would be 100% worse than i have it, and i know he would never leave me if the situation was reversed.
i get angry all the time and so so so tired with having to do everything for the both of us, its such a hard thing to deal with at such a young age. i often miss being young and being able to do what i like, i guessed its forced me to grow up. theirs a lot that i miss out of relationships, we are trying to have a baby at the moment which is putting alot of stress on our relationship, due to the fact that we possibly have to go through ivf. anyway im blabbing. i just thought id write to you to let you know, i understand where your coming from and i have the same thoughts. us spouces of sci people are in my eyes one of a kind.
i also believe life is what you make it and yeh the chair makes it hard but i look at it as im a very lucky person to have such a wonderful fiancee that treats me perfect, and yes ive got a hard life along with it but his life is harder and if he can do it so can i. we can still have a normal life but its just a different route. we laugh we fight we have good and bad just like everyone else.
take the time to laugh it will make you feel better, and even though i am so young and starting out in life i have been through a lot, my boyfriend before wasnt so lucky as to end up in a chair (road accident) he died and i have learnt alot one thing was to talk dont bottle things up, sit down with your family, talk let the kids talk. get things out in the open so you all know how eachother feel.
all i have to do is look at my fiancee and know im happy He is ALIVE........
he had a motorbike accident and broke his neck, he was so close to death.
but he has a second chance and im gratefull for that.
Hi how are you, i can totally understand where your coming from and i do have those feeling to, from what i undertand its normal, but it still hurts, and is worrying. im 24 and have been with my fiancee for 3 years he is a c6 quadriplegic. aswell as being a fiancee i am also his primary carer, we have just built a house to!!!. its so hard trying to put a line so to speak between the carer and the fiancee responsibilities, i have days where i feel i cant do this but what keeps me going is the fact that he has to do it and that would be 100% worse than i have it, and i know he would never leave me if the situation was reversed.
i get angry all the time and so so so tired with having to do everything for the both of us, its such a hard thing to deal with at such a young age. i often miss being young and being able to do what i like, i guessed its forced me to grow up. theirs a lot that i miss out of relationships, we are trying to have a baby at the moment which is putting alot of stress on our relationship, due to the fact that we possibly have to go through ivf. anyway im blabbing. i just thought id write to you to let you know, i understand where your coming from and i have the same thoughts. us spouces of sci people are in my eyes one of a kind.
i also believe life is what you make it and yeh the chair makes it hard but i look at it as im a very lucky person to have such a wonderful fiancee that treats me perfect, and yes ive got a hard life along with it but his life is harder and if he can do it so can i. we can still have a normal life but its just a different route. we laugh we fight we have good and bad just like everyone else.
take the time to laugh it will make you feel better, and even though i am so young and starting out in life i have been through a lot, my boyfriend before wasnt so lucky as to end up in a chair (road accident) he died and i have learnt alot one thing was to talk dont bottle things up, sit down with your family, talk let the kids talk. get things out in the open so you all know how eachother feel.
all i have to do is look at my fiancee and know im happy He is ALIVE........
he had a motorbike accident and broke his neck, he was so close to death.
but he has a second chance and im gratefull for that.
#4
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Posted 23 January 2007 - 08:58 PM
Hi Hope
Welcome! I'm sure you and your husband have come a long way since his accident. If you look back now, you will be amazed at the strength you had in the earlier days and should be proud of yourself.
My daughter's personality changed when my hubby first became ill 3 years ago. Now she is a giggling 7 year old with attitude! For me, this was the worst as I felt I should have been there for her more.
My doctor offered me counselling 2 years after hubby's SCI and I found that by talking about everything really helped. I was not judged in any way. It's tough and you manage at the time but there's no space to deal with everything emotionally so it all catches up with you, when you start to relax. I found acceptance through the counselling of the change in lifestyle.
Find some time to be you again and look after yourself.
Georgie xx
Welcome! I'm sure you and your husband have come a long way since his accident. If you look back now, you will be amazed at the strength you had in the earlier days and should be proud of yourself.
My daughter's personality changed when my hubby first became ill 3 years ago. Now she is a giggling 7 year old with attitude! For me, this was the worst as I felt I should have been there for her more.
My doctor offered me counselling 2 years after hubby's SCI and I found that by talking about everything really helped. I was not judged in any way. It's tough and you manage at the time but there's no space to deal with everything emotionally so it all catches up with you, when you start to relax. I found acceptance through the counselling of the change in lifestyle.
Find some time to be you again and look after yourself.
Georgie xx
#5
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Posted 23 January 2007 - 09:04 PM
Hope & littlemiss
As mentioned previously, this site is a wonderful resource for info from others w/ similar experiences, however sometimes listening to others while helpful doesn't give relief from the frustration that comes with our situation (I'm c-6-7 for 20yrs). i can assure you that the 1-2 year period is probably the toughest, especially mentally, but while it's always hard work, it does get better as you learn what works, figure out new ways etc (it took 1 1/2 yrs before I had the strength to even dress myself, now my wife says her friends are jealous because i do more housework than their AB husbands). We've been together 7yrs, married 4+, she's an RN with 15 yrs of SCI experience which is handy of course, but we realized that you MUST have seperation between wife & carer. Bowel care is my primary need (I do it daily), we have a nurse come in to do it because while she's more than happy do it wheen needed, there's a HUGE difference mentally to her between HAVING to do it each day and doing it when necessary (nurse doesn't show, occasional accident etc). I think as you listen to others who have had successful long-term relationships you'll find that the seperation of duties is a common, important thread.
Also Hope, when newly injured we all like to feel that as you said "we're the same person, just a different package", as time goes on we realize that's just not true - SCI is a life & personality-changing event and it is very frustrating trying to be who you were when you aren't. You must come to accept who you are now, what you can do and what you want to strive to become.
Good luck to you both
Brant
As mentioned previously, this site is a wonderful resource for info from others w/ similar experiences, however sometimes listening to others while helpful doesn't give relief from the frustration that comes with our situation (I'm c-6-7 for 20yrs). i can assure you that the 1-2 year period is probably the toughest, especially mentally, but while it's always hard work, it does get better as you learn what works, figure out new ways etc (it took 1 1/2 yrs before I had the strength to even dress myself, now my wife says her friends are jealous because i do more housework than their AB husbands). We've been together 7yrs, married 4+, she's an RN with 15 yrs of SCI experience which is handy of course, but we realized that you MUST have seperation between wife & carer. Bowel care is my primary need (I do it daily), we have a nurse come in to do it because while she's more than happy do it wheen needed, there's a HUGE difference mentally to her between HAVING to do it each day and doing it when necessary (nurse doesn't show, occasional accident etc). I think as you listen to others who have had successful long-term relationships you'll find that the seperation of duties is a common, important thread.
Also Hope, when newly injured we all like to feel that as you said "we're the same person, just a different package", as time goes on we realize that's just not true - SCI is a life & personality-changing event and it is very frustrating trying to be who you were when you aren't. You must come to accept who you are now, what you can do and what you want to strive to become.
Good luck to you both
Brant
#6 *Hope*
Posted 24 January 2007 - 02:08 AM
Thanks for all the support. I do plan on talking to someone about my issues and I am hopeful that it helps. I will admit that I sometimes feel jealous for you couples that got together post accident. You met as SCI and never knew that person as any different. You fell in love that way. Very cool!!! For those of us that have known our husbands or wives for 15 years or what ever it may be as AB individuals and suddenly have that ripped away... it is very hard. There are so many changes to get used to. Not to mention the intamacy changes. Okay ... I am Canadian... I just come out with it...sorry. Let's face it.... what once was is no more and it sucks in a huge way. I guess my job is to get past what I don't like about our situation and try concentrate on what is still good or what can be good. I don't know...maybe I just have a lot of troubles dealing with reality sometimes. It is easier living in a fantasy world.
Now I'm not making any sense. Sorry. I will shut up now. Anyway... thanks again for all of your support and kind words. Though it may not give me any real answers it is nice knowing their are people out there that care and are willing to listen to my rambling.
Hope (JLH)
Now I'm not making any sense. Sorry. I will shut up now. Anyway... thanks again for all of your support and kind words. Though it may not give me any real answers it is nice knowing their are people out there that care and are willing to listen to my rambling.
Hope (JLH)
#7
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Posted 24 January 2007 - 03:34 AM
Hope,
My husband's injury was a year ago Jan. 5th. He is a C5 Quad. And I absolutly "Hate" using the word Quad or Permanently Disabled. Because we will always have hope, belief and faith. And yes, I can relate. I miss my husband riding his horse next to me thru our beautiful trails. I miss just jumping into the truck to go for a cruze. I miss everything we would do on just a whim. Now we have to plan, pack, check the weather, make resirvations. But ya know what? I would miss so much more if he wasn't here.
I don't know what to say to you, 'cause nobody can say it to me. All I know is, its gotta get better. I love my husband and life really is good.
Take care,
Stick-Tight
My husband's injury was a year ago Jan. 5th. He is a C5 Quad. And I absolutly "Hate" using the word Quad or Permanently Disabled. Because we will always have hope, belief and faith. And yes, I can relate. I miss my husband riding his horse next to me thru our beautiful trails. I miss just jumping into the truck to go for a cruze. I miss everything we would do on just a whim. Now we have to plan, pack, check the weather, make resirvations. But ya know what? I would miss so much more if he wasn't here.
I don't know what to say to you, 'cause nobody can say it to me. All I know is, its gotta get better. I love my husband and life really is good.
Take care,
Stick-Tight
#8 *onion*
Posted 25 January 2007 - 04:33 AM
Hi Hope,
Yup everyone says at one time or another "can I live this way"........even your guy. It's not a one way street, although it might seem that way from his point of view, but now it comes from your's. So take a breath and back up a moment....take baby steps, For us it was laughter...that worked..a shared memory.....things can work out, and it's not easy, but the reward is great and the "can I live this way" becomes I want to live and enjoy every day.
onion
Yup everyone says at one time or another "can I live this way"........even your guy. It's not a one way street, although it might seem that way from his point of view, but now it comes from your's. So take a breath and back up a moment....take baby steps, For us it was laughter...that worked..a shared memory.....things can work out, and it's not easy, but the reward is great and the "can I live this way" becomes I want to live and enjoy every day.
onion
#9
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Posted 26 January 2007 - 08:15 PM
Hope,
I am going through the same thing. Some days (or weeks) my tank runs a little low and I find myself asking the same question: "Can I do this?" I, too, need to talk to someone eventually. But in the meantime, 2 things help me...
1) I realized that when I wonder how on earth can I keep this up, right there I am attempting to live in the future, and I can't do that. I can't live in the past, I can't live in the future, I can only live right now.
2) When those thoughts and feelings do challenge me, and I wonder how much more I can take, I ask myself: "Are you going to quit right now? No? Then worry about tomorrow, tomorrow."
Those 2 frames of mind have helped me a lot over the last 7 months.
I understand how you are feeling. Hang in there.
I am going through the same thing. Some days (or weeks) my tank runs a little low and I find myself asking the same question: "Can I do this?" I, too, need to talk to someone eventually. But in the meantime, 2 things help me...
1) I realized that when I wonder how on earth can I keep this up, right there I am attempting to live in the future, and I can't do that. I can't live in the past, I can't live in the future, I can only live right now.
2) When those thoughts and feelings do challenge me, and I wonder how much more I can take, I ask myself: "Are you going to quit right now? No? Then worry about tomorrow, tomorrow."
Those 2 frames of mind have helped me a lot over the last 7 months.
I understand how you are feeling. Hang in there.
#10
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Posted 31 January 2007 - 04:17 AM
Hi hope:
I read what you post and I'm sorry about all of this, as a rehabilitation counselor student(doing my internship) and also girlfriend of a guy who uses a wheelchair I must say that everything that you're going on its totally normal!!! Your whole life change drastically and besides dealing with your husband you also have 2 kids and thats a lot of pressure...My humble advice for you is that get professional therapy to the whole family..Dont forget that your kids are going trough a hard time also with all of this, so get them into therapy can be a very good idea... Its been very recently since the accident and your husband is going trough a lot, so do you think that he will be willing to accept going to marriage counseling with you?? I think that it could help, I know that is probably things that you want to tell him and you dont know how to and vice versa, talking to a professional can help you both to ventilate this issues and things could get better..
About the sex part, its going to take a while for him to adapt to the changes because as you know sex means everything for men!! So, take it easy with him in that area, but not everything is lost is still a lot of ways for you 2 to have a fulfilling sex life, 1st try to deal the emotional part and later that area will get better..
Good luck!!!!
I read what you post and I'm sorry about all of this, as a rehabilitation counselor student(doing my internship) and also girlfriend of a guy who uses a wheelchair I must say that everything that you're going on its totally normal!!! Your whole life change drastically and besides dealing with your husband you also have 2 kids and thats a lot of pressure...My humble advice for you is that get professional therapy to the whole family..Dont forget that your kids are going trough a hard time also with all of this, so get them into therapy can be a very good idea... Its been very recently since the accident and your husband is going trough a lot, so do you think that he will be willing to accept going to marriage counseling with you?? I think that it could help, I know that is probably things that you want to tell him and you dont know how to and vice versa, talking to a professional can help you both to ventilate this issues and things could get better..
About the sex part, its going to take a while for him to adapt to the changes because as you know sex means everything for men!! So, take it easy with him in that area, but not everything is lost is still a lot of ways for you 2 to have a fulfilling sex life, 1st try to deal the emotional part and later that area will get better..
Good luck!!!!
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