Our Story...
#1
Posted 16 April 2008 - 02:04 PM
This is my first time posting here... My boyfriend is a T5/T6 incomplete and we certainly have had our ups and downs. We were together for a year and a half before he had an accident on his offroad bike. Before the accident he was very affraid of commitment and kept breaking up with me. I moved on but still missed him so much. One evening I received a phone call from his mother to say that he had had an accident. The accident happened about 1 and a half years ago. I couldn't face him until about 6 months later when he had moved in with his best-friend and he had dealt with it a little bit. So, I met up with him and all my old feelings came rushing back and I knew that I still loved him. I knew that we were meant to be together, regardless of the situation.
So, we got back together again and we eventually moved in together. He has a house but didn't want to move back until he walked again. Eventually I gave him an ultimatum and he agreed to move home and have me live with him. We haven't looked back since. We tend to get really frustrated at times and argue about petty little things. But we love eachother.
I also get very frustrated coz he lies on his stomach every night as he gets severe spasms and can't sleep on his side or back because his legs jump and it hurts him. I miss cuddling with him so much! So, sometimes, I lie in his arms for a few minutes before I have to get ready for work. Just to feel that closeness. I can't sit too close to him on the couch either - because of the spasms. It is a real irritation!
I have been getting very frustrated lately because he can do basically everything for himself but when I am home he will take me away from everything I am doing just to get me to do those things for him, because it is easier for him to get me to do it instead of him doing it himself. But I am learning the art of communication, and he is learning it too... It helps a lot! I just have to ask him to try doing it himself first and then call me if he needs help or I tell him to wait, and by the time I get to him he has done it himself.
My bf really has not accepted the fact that he is paralysed and gets depressed often, which in turn makes me depressed. But he still has faith that he will walk again. Even if he doesn't walk properly. He lives with hope but just can't accept the way he is now and make the most of what he has left. I've been trying to comfort him and explain to him that it could be a lot worse. That his life has been spared for a reason. He wants to get married and have a family now but won't do that until he walks... What if he doesn't walk? He could have everything he wants but he won't do it in a wheelchair. I want to marry him and have his children, whether he is paralysed or not. I have told him this but then he just tells me to move on then coz he won’t be able to give me what I want - obviously not realising that what I really want is him (even though I have explained it over and over again). He won't learn to drive or go out anywhere! He just wants to stay at home all the time but that is not good - not good for anyone.
He is 26 and I am 23. His family have abandoned him - they don't even bother phoning him to find out if he is alright. Some family members live just up the road from us but don't bother visiting. He only has 2 real friends left. His best friend is married with 3 kids and he is excellent with him. He takes him to therapy and gym every day of the week and he is always there to comfort me when things get really bad between us. He encourages him when I can't.
Anyway, so that is our story. Just wondered if anyone could relate to our situation and if any of you think there hope for us to have a family and a good, fun life together and what more I could do to help him reach that place with me...?
Thx
#2
Posted 16 April 2008 - 02:53 PM
#3
Posted 16 April 2008 - 03:31 PM
It's great that you stayed with the man you love - even if you have your ups and downs. When you do get frustrated remember to talk to each other - communication is very key in relationships. I'm so sorry that his family doesn't share these same feelings. Perhaps a visit by you guys to the family that lives near by could do some good.
For the spasms that your boyfriend is having, is he on any medication such as Baclofin for it? My hubby takes baclofin and this greatly reduces his spasms. He also sleeps on his back with leg splints - perhaps you bf can do the same?
And when your bf says "to move on because he can't give you want you want" that is totally wrong! If you want to get married and have kids there's no reason why you can't have all those things with him.
Finally, my only other suggestion is to really talk to him. Tell him exactly what you said in this post.
Feel free to PM or email me with any other questions
My Blog: www.inanemusings.wordpress.com
#4
Posted 16 April 2008 - 06:15 PM
My fiance is c5-c6. We were together for 4 years before his injury, and have been together for almost 2 after. My fiance really wasn't doing much for himself, until maybe 3 months ago. And at that time, I decided that I needed to sit down and have a discussion about it. He was angry at first, but over the last couple months you can really see that his confidence has grown tremendously. He is now even more willing to try new things, and attempt new tasks.
Anyways, as far as him accepting his injury, that's a tough one... My fiance accepted it fairly quickly. I was the one who hadn't. It took about a year and half for me to realize that things were going to be OKAY either way. I know that he hasn't given up hope...but that he is not going to sit and dwell on the fact that he WILL walk again. It's time to just live our lives. Time for him to live his life with the way he is.
I guess I would suggest really sitting down and talking to him. He'll probably be angry, but I think he just needs to hear it. And give him a little time to really take in what you say. He doesn't need to accept his injury...but he needs to still live his life.
#5
Posted 16 April 2008 - 10:13 PM
I'm concerned with the way your man tells you to 'move on' if you want certain things in your near future that he's not ready to confront right now!! That's down right insensitive and selfish of him.
---Just a few thoughts to mull over that may help:
Maybe spending some time away from each other will allow him the opportunity to discover what he has in you.
Also, if your ready for a family and kids and he isn't . . . due to timing/ depression, having a feeling of inability, etc., maybe you just might consider having to do as he requests.
Sometimes you can talk 'til your blue in the face, but you can't force someone to do something they're unwilling to change for your benefit. (BTW, I agree with the other posts regarding the open communication first and foremost. My post deals with alternatives if that doesn't work.)
Lastly, It's been some time since his injury. . . is he on any antidepressants to help with the depression?
Good luck!
#6
Posted 17 April 2008 - 12:33 AM
You don't mention whether you BF is working. At T5/T6 incomplete and 26 years I presume he has a job. That is where he will get his motivation, pride, dignity, social network, and much more. Better still he'd arrive home tired and ready for a some cozy cuddles and appreciate of an any caring. If he already has a rewarding job then I guess I have little to offer.
Although I cannot move and I have to speak through a computer, in my mind I am free.
#7
Posted 17 April 2008 - 12:55 AM
Maybe he would do well with some sort of peer support where he talks with another man with a similar sci. My husband has been injured for almost 20 years, and while I was not with him at the time he has told me about it a lot and I know the first year was very hard for him. I am all for belief in a cure,,but your b/f has to get to the point where he is living his life now because the cure may not come as soon as he hopes and why waste all that time.
Speaking from experiance here...don't wait on him just because it is easier for you to do it for him. That is habit I got into and it will wear on you over the years, and it is a hard habit to break. If you are doing something tell him you will help if WHEN you get done. You both are still young enough that you are not running out of time to reach the point of having a family so maybe he just needs more time to adjust. However, if he keeps telling you he doesn't want marriage and kids until he walks or whenever....at some point you need to think about what if he is being honest. How will you feel if in 5 years he still doesn't want the same things you do??
I hope things get better for both of you soon.
#8
Posted 17 April 2008 - 09:27 AM
Where do I start...?
Well, my boyfriend has been offered 3 jobs but declined all of them... His reason was that it would be giving up. Giving up on working towards walking that is... His friend and I have tried to pursuade him and support him with this but he won't hear of it. We really thought it would do him a lot of good.
As for the spasms... He has so many bottles of Baclofen but won't take them as someone (I don't know who) told him that this will kill off his muscles completely. So now he suffers instead. We had to get a new bed because of this (Tempur) as we were both not sleeping properly. It hasn't helped him much though. We live in South Africa and our rehab facilities are very expensive but he went to one for 2 months after the accident. I think he needed to be there a bit longer. He doesn't have a doctor at the moment - he despises them after 2 of the 3 doctors that were tending to him at the time told him he would never walk again. I suggested we go to church as he feels that God has left him but he won't go. It feels as if he has given up and I so want to build him up but don't know what more to do.
Last night I was given the silent treatment and thought that this morning when we wake up that things would be different but no such luck. He gets like this often and then I get upset wondering what I have done wrong. But I know I did nothing wrong - it's just because of how he is feeling in himself. He often tells me to pack my stuff and move back in with my folks because he can't make me happy and this is how it will always be. He doesn't seem to realise that I will never be happy if he isn't happy... his moods rub off on me. I wonder if that is normal. His friend had a chat with him this morning and seems to think it is because he really believed he was going to get up and walk yesterday. And that he takes his frustrations out on me because I am the closest to him. He just doesn't talk to me about what is going on with him, no matter what I try. I am always there for him but he doesn't often tell me how he is feeling. I know it is good that he believes in himself some days and really believes that he will walk but he builds himself up so much that when it doesn't happen he gets so miserable and angry that has the total opposite effect on him.
I often wonder how I would feel if, 5 or 10 years down the line, we are still where we are now. It really scares me.
On the good days I forget about how terrible the bad days were and on the bad days I tend to forget about how great those good days were... It's like we have mixed feelings all the time and it gets really draining.
Thank you again for your replies. It is so nice to feel understood and to get such great advise :-)
#9
Posted 17 April 2008 - 01:29 PM
Isaiah 40
29 He gives strength to the weary
and increases the power of the weak.
30 Even youths grow tired and weary,
and young men stumble and fall;
31 but those who hope in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.
My husband told me to go on with my life and "gave me an out" when he was in the hospital. Of course, I didn't go anywhere. I Love him. I haven't always loved his behavior or attitude. I think that men talk this way because of their ego. You love your boyfriend, just keep loving him. I hope this makes sense. It isn't easy, I know. About the baclofen, you may want to research exactly how the medicine works, there are lots of medical sites on the web to look up medicine. You are welcome to email me directly. I am in the states but I will help you the best I can through my experience.
#10
Posted 17 April 2008 - 01:43 PM
[/quote]
Thank you so so so much! You wouldn't believe how much I appreciate that. It is really comforting to know I can chat to you and have your support.
#11
Posted 17 April 2008 - 05:12 PM
ParaGF, on Apr 17 2008, 09:27 AM, said:
Jeez! . . . as one South African to another, tell your boyfriend to catch a wake up call! Living in SA he's got WAY bigger problems than his disability. He needs to get a life, get a job, and get an airline out of SA. In ten years it's going to be real hard times for us, we'll be lucky to have any form of medical services, let alone "the cure". He's waiting for the bus, and it's not coming!
#12
Posted 17 April 2008 - 07:19 PM
ParaGF, on Apr 16 2008, 10:04 AM, said:
This is my first time posting here... My boyfriend is a T5/T6 incomplete and we certainly have had our ups and downs. We were together for a year and a half before he had an accident on his offroad bike. Before the accident he was very affraid of commitment and kept breaking up with me. I moved on but still missed him so much. One evening I received a phone call from his mother to say that he had had an accident. The accident happened about 1 and a half years ago. I couldn't face him until about 6 months later when he had moved in with his best-friend and he had dealt with it a little bit. So, I met up with him and all my old feelings came rushing back and I knew that I still loved him. I knew that we were meant to be together, regardless of the situation.
So, we got back together again and we eventually moved in together. He has a house but didn't want to move back until he walked again. Eventually I gave him an ultimatum and he agreed to move home and have me live with him. We haven't looked back since. We tend to get really frustrated at times and argue about petty little things. But we love eachother.
I also get very frustrated coz he lies on his stomach every night as he gets severe spasms and can't sleep on his side or back because his legs jump and it hurts him. I miss cuddling with him so much! So, sometimes, I lie in his arms for a few minutes before I have to get ready for work. Just to feel that closeness. I can't sit too close to him on the couch either - because of the spasms. It is a real irritation!
I have been getting very frustrated lately because he can do basically everything for himself but when I am home he will take me away from everything I am doing just to get me to do those things for him, because it is easier for him to get me to do it instead of him doing it himself. But I am learning the art of communication, and he is learning it too... It helps a lot! I just have to ask him to try doing it himself first and then call me if he needs help or I tell him to wait, and by the time I get to him he has done it himself.
My bf really has not accepted the fact that he is paralysed and gets depressed often, which in turn makes me depressed. But he still has faith that he will walk again. Even if he doesn't walk properly. He lives with hope but just can't accept the way he is now and make the most of what he has left. I've been trying to comfort him and explain to him that it could be a lot worse. That his life has been spared for a reason. He wants to get married and have a family now but won't do that until he walks... What if he doesn't walk? He could have everything he wants but he won't do it in a wheelchair. I want to marry him and have his children, whether he is paralysed or not. I have told him this but then he just tells me to move on then coz he won’t be able to give me what I want - obviously not realising that what I really want is him (even though I have explained it over and over again). He won't learn to drive or go out anywhere! He just wants to stay at home all the time but that is not good - not good for anyone.
He is 26 and I am 23. His family have abandoned him - they don't even bother phoning him to find out if he is alright. Some family members live just up the road from us but don't bother visiting. He only has 2 real friends left. His best friend is married with 3 kids and he is excellent with him. He takes him to therapy and gym every day of the week and he is always there to comfort me when things get really bad between us. He encourages him when I can't.
Anyway, so that is our story. Just wondered if anyone could relate to our situation and if any of you think there hope for us to have a family and a good, fun life together and what more I could do to help him reach that place with me...?
Thx
Welcome to the forum. There is life in a chair! I have same injury. Married 20 years last week. My wife will be happy to give advise to you on the tough love aspect of a relationship with a para. Took me 3 years to be able to walk 30 feet. Still not functional but getting better. Check out the video on www.myspace.com/richieakamotor its at the bottom right. PM me with questions on spasms. There are ways to deal. The link to my myspace page is in my profile as well.
Good luck
Richie aka Motor
This post has been edited by Motor: 17 April 2008 - 07:20 PM
"NEVER 4GET 9/11/01 THEY ARE GONE BUT NOT 4GOTTEN"
"I MUST CRAWL BEFORE I WALK (AGAIN)"
"LIVE EACH DAY LIKE ITS YOUR LAST"
"RIDE IT LIKE U STOLE IT"
Richie aka MOTOR :-)
#13
Posted 17 April 2008 - 10:34 PM
There are great supprt centres on Joburg. I dunno where you are, but Mandeville (Kensington, JHB) is great, they have a hige selection of sports for quads and paras. Get in touch with me if you like about all that.... A great support network is available right there. I am in Madrid right now, but I guess I can help for that area....
xxx
Monika
#14
Posted 17 April 2008 - 11:39 PM
This post has been edited by Tired of hurting: 17 April 2008 - 11:41 PM
#15
Posted 18 April 2008 - 08:57 AM
monikamadrid75, on Apr 17 2008, 10:34 PM, said:
There are great supprt centres on Joburg. I dunno where you are, but Mandeville (Kensington, JHB) is great, they have a hige selection of sports for quads and paras. Get in touch with me if you like about all that.... A great support network is available right there. I am in Madrid right now, but I guess I can help for that area....
xxx
Monika
Hi Monika,
Thank you for the reply. We live in Empangeni. We are really far from Joburg. And my bf won't relocate but I am really feeling better having received so many replies here! I feel that there is light at the end of the tunnel after all. Everybody's advice is really helping!
So, thank you everyone! Much appreciated!
#16
Posted 21 April 2008 - 09:09 AM
Welcome to the forum. There is life in a chair! I have same injury. Married 20 years last week. My wife will be happy to give advise to you on the tough love aspect of a relationship with a para. Took me 3 years to be able to walk 30 feet. Still not functional but getting better. Check out the video on www.myspace.com/richieakamotor its at the bottom right. PM me with questions on spasms. There are ways to deal. The link to my myspace page is in my profile as well.
Good luck
Richie aka Motor
[/quote]
Hi there Richie,
Thank you so much for the reply. Sorry to reply so late - I only have access to the internet at work.
It's great that you are able to walk 30 feet! Congrats! What kind of exercises do you do and how often? I so wish my bf could be able to do more! Or at least try to do more. I don't know what more to do to encourage him and get him to do more for himself. He complains that when he needs to do things by himself that his hips click out of place or that his body twists, but I do think that he should learn to do more for himself. Wouldn't that get his body working again - in some way...? I often find him punching his legs really hard and they bruise. It really hurts me to see this happen as I take good care of him and I love him. Surely he is doing more damage by doing this...
Thanks again :-)
Melissa
#17
Posted 22 April 2008 - 09:22 AM
qbounce, on Apr 16 2008, 10:13 PM, said:
I'm concerned with the way your man tells you to 'move on' if you want certain things in your near future that he's not ready to confront right now!! That's down right insensitive and selfish of him.
---Just a few thoughts to mull over that may help:
Maybe spending some time away from each other will allow him the opportunity to discover what he has in you.
Also, if your ready for a family and kids and he isn't . . . due to timing/ depression, having a feeling of inability, etc., maybe you just might consider having to do as he requests.
Sometimes you can talk 'til your blue in the face, but you can't force someone to do something they're unwilling to change for your benefit. (BTW, I agree with the other posts regarding the open communication first and foremost. My post deals with alternatives if that doesn't work.)
Lastly, It's been some time since his injury. . . is he on any antidepressants to help with the depression?
Good luck!
Hi there,
Thank you so much for the reply. I really do appreciate it!
I think my bf has some sort of depression, and yes, I suppose it is expected. But he won't seek any help from anyone and won't take any meds at all.
He was prescribed Baclofen for the spasms but won't take them because he doesn't want skinny legs - he has a 'Winks Green' machine (don't know if anyone has heard of it) and the lady who sold it to him said that he mustn't take the medication as it will stop the messages going from his brain to his legs... But then he ends up getting so frustrated with the spasms that he punches them and they bruise!
We have had a good long chat and I have told him about all the advice that I received here (which has been extremely helpful - THANK YOU!) but he still won't move on and deal with life the way it is now, but insists on living in the hope of walking soon... I do realise it will take time though. It's great that he is positive but he is putting life on hold and all I can think of is "what if it doesn't happen" or "what if it takes a really long time"... How will he deal with everyday life until then...
I must say that he has been more thoughtful lately and he is giving me some attention now - which is a big improvement
Thank you all for the support!
ParaGF
#18
Posted 23 April 2008 - 03:58 AM
I agree with the others that the job thing would be huge, even something that might not have been what he was interested in doing before. Something simply or whatever, without too much responsibility. And I know it might sound odd, but what about a holiday just the two of you? Could even be somewhere close by, just nice to be 'away'.
I have a hard time saying the things that bother me sometimes (the ignorant looks, questions, etc) but I have learned that I have to talk to him about it. Sometimes I write it down like I am emailing a friend and then just let him look at it. Easier and less confrontational than talking about it.
I hope all the best for you though, and if you ever have any questions etc, just let me know. My boyfriend is 30 (younger at heart though) and might be able to shed some light if you want.
#19
Posted 24 April 2008 - 07:25 AM
guest000, on Apr 23 2008, 03:58 AM, said:
I agree with the others that the job thing would be huge, even something that might not have been what he was interested in doing before. Something simply or whatever, without too much responsibility. And I know it might sound odd, but what about a holiday just the two of you? Could even be somewhere close by, just nice to be 'away'.
I have a hard time saying the things that bother me sometimes (the ignorant looks, questions, etc) but I have learned that I have to talk to him about it. Sometimes I write it down like I am emailing a friend and then just let him look at it. Easier and less confrontational than talking about it.
I hope all the best for you though, and if you ever have any questions etc, just let me know. My boyfriend is 30 (younger at heart though) and might be able to shed some light if you want.
Thank you very much for your reply. It is so nice hearing from people in the same kind of situation as me. I must say, this has all been so hard on me lately.
Well, my boyfriend and I have made a few hard decisions but we think it will all be for the best in the long run. I will be moving back in with my parents and finishing my part-time studies while still working during the day. I have only got a year left and if I don't carry on with it soon, I would have wasted the past 2 years of studying and not get my diploma that I have worked so hard for. The thing is that the college and my job are in another town and it would be far too dangerous for me to drive back late at night to go back to my bf's house during the week. This will also help him to help himself. My classes start in 2 months which is perfect as he can start learning to do more for himself while I am still there to watch over him and help him if need be. I feel so bad for making this decision and his family think I am being really selfish but he won't budge on any of the issues bothering me. He won't go away with me for a weekend, he won't go out to dinner or a movie, he won't learn to drive or think of getting a job. He is insistent that he will never marry and have children while he is in a wheelchair. This has all just really affected me in a way I am unable to describe. I really want to be with him but maybe a bit of a break will make him realise what he could have and that there is still so much opportunity for him. I will see him on weekends and always be there for him when he needs me. And I will miss him so much during the week! I just feel like we are still young and that there is so much we could be doing instead of staying home every single day and moping around. I need more from him and when I tell him all this he tells me that he can't give me what I want so I must move on.
Does this all seem selfish of me? I feel really guilty for putting myself first here and I am so scared that I am going to have regrets.......
ParaGF
#20
Posted 25 April 2008 - 02:00 PM
Do not feel guilty or selfish, I think you have been brave, and you do need to make sure that you do have your own life, and I think think that finishing your studies is important, and whilst you are not around, it make help your boyfriend to look at the picture more fully
Good luck, amd let us know how you are getting on.
Cate.
#21
Posted 25 April 2008 - 02:08 PM
cate, on Apr 25 2008, 02:00 PM, said:
Do not feel guilty or selfish, I think you have been brave, and you do need to make sure that you do have your own life, and I think think that finishing your studies is important, and whilst you are not around, it make help your boyfriend to look at the picture more fully
Good luck, amd let us know how you are getting on.
Cate.
Wow! You have just hit the nail on the head. I feel selfish! But I am so exhaused.
Thank you for replying to my post. I am going to tell him tomorrow that I will be leaving and explain it all to him. I think it might help him to become more independant and learn more about life and himself and exactly what the situation has been doing to him, me and our relationship.
Thank you again and I will let you all know how it goes - it is going to be so hard and upsetting but it needs to happend.
Thanks again :-)
Melissa
#22
Posted 25 April 2008 - 08:10 PM
I replied to your newer post as well, then I knew your plight sounded familiar!
Leave the guy, already! He keeps telling you to, also. I know the guilt thing plays a part, but he's voiced his position. . . . now it's your move!!
Hey, you've done all you could up 'til now. . . sooo, good luck back at school.
#23
Posted 19 January 2009 - 10:13 AM
It's been a long time since I have been on this site and since my last post. I have become religious, been saved and baptized, I have found myself, fixed myself, learned patience, started studying again and just become the confident, active person I knew I wanted to become. I feel strong! I left my para bf in April 2008 (as can be seen in previous posts) and we tried to be friend but that didn't work because he didn't give me any space to try and work things out for myself and we ended up losing touch for a few months. Now that I know where I am in my life and know what I am and am not capable of doing, I contacted him and we are now friends again. I will visit him soon, with the little pooch we adopted together and maybe see where things go. I miss what we were and have been told by his friends and family that he has learned to be 98% independant and actually goes out now and has goals, etc... So, by me moving out he has learned to take care of himself... He has realised what he wants in life and is willing to do anything to achieve his goals. I realise that there will always be things we cannot do but I have missed him these last couple of months, he was my best friend. He just didn't want to deal with the fact that he won't be able to walk again... He has apparently come to terms with that now... So, I am hoping things will work out and maybe we could try to be together again someday and have the family we always dreamed of...
Just wanted to share this will you :-)
Have a great day!
ParaGF
#24
Posted 19 January 2009 - 06:35 PM
Keep us posted on how things go!!
#25
Posted 20 January 2009 - 01:00 PM

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