[Meredith]

Ok-here's the back story-was friends with my now bf for 3 years, then starting dating. We've been dating for two years now. Soon after we started dating, he had to go into the hosptial for flap surgery on a pressure sore. After that surgery, during transport home, he was dropped and a new sore opened up to the bone due to previous scar tissue in that area. That lead to 8 months on bedrest, then 1 1/2 months up than another surgery and month of bedrest. During that surgery, the dr. discovered that the sore that had been to the bone caused a bone infection. My bf fought it with antibiotics for another year, while working and living as normal can be. Well, he just had to have another surgery to get the bone scrapped and is back in the hospital for only God knows how long and bedrest for at least a month after that.

Here is the reason for the post-I'm losing it. I am sad, scared, angry and bitter. I feel like I will start to bring him down b/c I just can't deal. I can't put a smile on my face, I can't pretend to be happy or optimistic anymore or at least right now. I don't want to go to the hospital, I don't want to see him or talk to him-I want to crawl in a hole and die. I am so mad at myself for getting into a situation that I obviously knew nothing about and allowing myself and him to fall in love to only find that I may not have the strength within in me to face hard times like these over and over. No part of me believes life will ever be different anymore bc its been nothing but the same horrible events, over and over. I'm not saying I want to break up or remove myself from the situation just bc it's hard but I can't do it every day. I just cannot. In the beginning, I would visit him everyday, seeing him would be the highlight of my day. I would rack my brain for what I could bring him or do to make him happy. I was always positive and hopeful and happy. and now I'm a miserable selfish jerk who wants to be alone and hates the world that carries on around us like nothing is wrong.

Idk, I am not a bad person and this isn't about leaving him bc I love him with all my heart...I guess I just want to know if anyone else can relate. My friends surely can't and I don't want to devulge my deepest feelings to them for the pity I know I'll get. I don't want it.

[Kev-O]

Hang in there Meredith. You have to be stong for not only him but yourself. You cant go back an change what happen so no point in letting it eat at you. Smiles are contaigous if you walk into his room with the biggest freakin smile on your face its sure to brighten up his day. Not being with him is just going to make it harder on both of you. Things always have a way of working out. It cant get any worse then it already is so it can only get better from here. Take a few days for yourself sit back an think about how lucky you are to have him in your life.

[jules]

I agree with Kev-O here, just hang in there, you will get there in the end.
All the best
Jules
xx

[qbounce]

Sounds like a rightly deserved rant session, Meredith.

Sometimes it feels like things will neveer be on a NORMAL keel. Yah, since dealing with a SCI's anything but normal, right?

You've been through a lot lately. I don't blame you for feeling like the only light coming out of the tunnel is another oncoming train!

How are his spirits holding up through all this? I'd bet to say, "Pretty well " considering who's by his side. The WORST part of this whole thing for him, if I could take a guess, is that he's constantly in a confounded HOSPITAL! Man, I really HATE hospitals with a passion. Especially since they aren't all that clean. The food tends to taste like recycled card board after awhile. And the service when requesting something is plain slow.

So, you see . . . .he NEEDS you to be there. He needs a rock to lean on. And, if you were to break down and tell him how difficult it's been for you, I'm sure he'd understand.

[irish]

Wow, Meredith, you are a trooper. You have gone above and beyond what anyone can expect, and hopefully you have a place to go to be alone when you're about to blow. My wife went through a lot of that and believe it or not, it does get better. Darkest before the dawn and all that stuff.

You are truly a keeper and your guy surely knows it. Keep up that strength and find a nice soft wall behind a door somewhere, where you can beat your head from time to time without causing irreversible damage.

Those of us who have been on the other side can only imagine the stress and frustration you feel, but without you it would make our live unbearable.

irish

[LuckyinKentucky]

Yo know you dont have to be happy & optomistic all the time... A lot of times I am pathetically optimistic just because if I wasnt I'd just be pissed all the time, and how much fun is that. But it does certainly wear ya down some times. I went down for bed rest 2 days ago and i still feel like a stormclolud.

Then again what would sunshine be without rainy days... humbug on that for now though cause I'm in a bad mood too.

[rmorgan]

I can semi relate to the things you are feeling Meredith. Coming from a female who's in a relationship with a man who has a SCI. The 'semi' part means I can't quite relate to the amount of hospital and surgery part, but being on the other end of the spectrum. Loving someone with all your heart but sometimes feeling like you want to pull your hair out because of the things associated with your partners SCI.

I go crazy sometimes. And sometimes feel like I got in WAY over my head. But the bottom line is about LOVE. and you love him obviously.

This too will pass honey and you guys can continue on and live in each other's love.

But imagine how he's feeling too. My man will get extremely upset knowing something that he can't help is bothering me, it tears at him too.

Be the strong woman you know you can be, no matter how exhausting, because the bad times are not going to last forever, even though it seems that way.

[Meredith]

Thanks everyone, it's weird but just knowing I am not alone and that someone can relate to me makes me feel 100% better. It gets lonely in so many ways. I had one helluva pity party for myself last night and stayed in bed until I was convinced it was over today! So, I am up and going to the hospital. :o)

Thanks again.

[Yasko]

Meredith, on Jun 27 2009, 12:10 PM, said:

Thanks everyone, it's weird but just knowing I am not alone and that someone can relate to me makes me feel 100% better. It gets lonely in so many ways. I had one helluva pity party for myself last night and stayed in bed until I was convinced it was over today! So, I am up and going to the hospital. :o)

Thanks again.

...and put a big smile on your face!

P.S. mini skirt and high heals would help too! j/k

Best regards to all great ladies like yourself.

[buff]

well are you living together? do you have to see him everyday? you are just dating right. i don't see men i am just dating every freaking day. and my bf i have now and i don't see each other everyday. i take two or three days a week where i will talk to him but i spend the evening with my son. so find a night or two to do something for yourself. in the end its for him too. it will help you to appriciate the time you do see him and you will not feel so much pressure

[Susie_nkc]

I can so relate! hugs to you. what keeps me going.. is... some one told me.... god doesn't give you any more than you can handle.

Sometime you just have to hold on tight to the good times. And Plan for some more!

One evening a few years back... me and my then husband went out to eat and to the casino. dinner was excellent. the waitress told us we looked happy... we were... we were on our way in to the casino and this temptations song came on... He said "that's my song" and started bobbing his head... I was feeling it too....I took over the hand control and we were dancing! we were happy.

I hold on to that!

Just the other day... we went shopping. I get him out of the van. he has a manual chair now.... but I get him out of the van... and turn around to get my purse... and he's rollen down the parking lot! He says "bye" I'm like Oh shit! get back here! we laugh at that stuff... this keep us going!

I call him a Piece of work... he is!

I married him when I was 22 and he was 38.... I'm 45 now.

Yeah it was hard. but then it came a way of life. one I really didn't want to welcome but I did what I had to do... and found that this is who I am... I know him so well I scratch his head before he ask! and he wants to know how I knew that!

Love is a very strong emotion... it may seam like a roller coaster ant times... Just hold on!

[Heather1984]

The way you are feeling is perfectly normal don't feel bad. Dealing with a SCI is very hard , not just for the injured person but for all their loved ones. I'm sure your boyfriend doesn't expect you to be made of stone and all that is going on not to bother you. Remember to take time for yourself it is ok if you need time to think. Keep your head up. Things will get better in time

[Slowlegs]

H Meredith,

I read your post the other morning before work and was wanting to post a reply but wasn't sure exactly how to post my thoughts without causing offence in the time I had available. Either way I will possibly cop some flak. I have seen some of your posts and seen some aspects of your relationship develop, seeing what you have experienced has reminded me there are people who do have relationships with severely injured persons and that perhaps there is hope for all of us in meeting that special person who is "the whole package" and reminded me there is still the possibility of meeting a great partner.

I have seen the posts in relation to this question and I do agree it is good to support your partner, you also have to think of your life as well. It is OK to think the way you have been thinking because it is natural and a normal reaction to having a partner with such a severe condition. I think our carers and partners do go through a lot of stress and do compromise a lot in their lives. It's just you've been doing a lot of that recently by anyones count. Hopefully this is just a temporary (although very long and unfortunate) setback and set of circumstances. I just think you have to really have a good look at the issues and perhaps consider talking to a good counsellor privately if you can't find a good way forward either with or without your partner yet.

You don't have to talk to your partner about any sessions if you don't want to as it is about your coping with his injuries. There may even be a person in the hospital he is in. You are young and perhaps you are not ready for this sort of commitment yet and perhaps you may never be - or it could be just a rough patch that you can handle but just need some help with. It's your decision entirely and I wouldn't want to influence that either way.

I do remember years ago that I met this gorgeous woman, I really liked her and we went out for a while. I have a colostomy and a number of other para issues and I wasn't sure how I would tell her about all the "other" stuff. For instance when I was out in my car with her I would sense my colostomy was about to pass some wind so I would open my window. Once it passed the gas it would go through the filter and they don't always extract all the smell. If I noticed it myself I would often comment on it as if there was a sewer leak in the area we were driving through and why the heck I was often opening my window when it was cold out. She must have thought the sewer system was particularly bad in our area that year or perhaps guessed anyway. I also used to leave my cushion in the car and put up with pain from sitting on hard surfaces at the beach and in awkward positions because I felt I didn't want to inhibit things she wanted to do.

I feared that she would dump me if I couldn't keep up with her and I didn't want to let her know the extent of my injuries or limitations for fear she would leave me. I know it was screwed up and dishonest but I liked her. We broke up after about six months. It would be interesting to hear from others, particularly guys, to see if this is what they have done in the past or perhaps I am just the only nutter on here. Perhaps that is even a new topic in itself. Now I am a bit more comfortable with myself and just go about my life with what I need - if they can't deal with my issues they are better off staying as just friends.

What I am getting to is that perhaps your partner is going through something similar. I think I remember you asking about adaptive sports and swimming off a boat or kayaking. Please forgive me if it wasn't you. I just feel he may be trying to "keep up" because he fears that if he doesn't he could lose you and perhaps this is leading to pressure sores, etc. You are educated, intelligent and loving not to mention good looking so perhaps he does what I did to an extent. Guys are always trying to impress girls and I don't think that ever changes.

Either way, I hope you find a way through this, it is obviously causing a lot of difficulty and concern for you so I thought I'd post a slightly different angle. What you are going through is a normal and natural reaction.

Good luck with what you decide and take care.

This post has been edited by Slowlegs: 01 August 2009 - 08:34 PM

[Birdy]

I have been married in a good marriage to my husband for 40 years. We very seldom spent a night apart. My husband became paralyzed from head to toe three years ago (total quadriplegia from Guillane-Barre syndrome) and I have felt and still feel a lot of the feelings you describe. I have wanted to never go back to the hospital again. I still feel like crying and running out and not going back a lot of the time. I still yearn for someone to hold me and to help me with all the things my husband helped me with before. I don't know how you girls who have just dated someone and aren't married to them keep going at all. If your commitment and stick with it isn't an example of the truest kind of love, I don't know what is. I know a young woman who dated a 22 year old man for nine months. Eight years ago he became paralyzed head to toe with Guillane-Barre syndrome and complications caused from West Nile virus. She drove to see him in the hospital where he lived every other weekend for three years a 5 1/2 hour each way drive. She came regardless of the weather conditions. She emailed him daily. She helped his parents with getting things for him. She finally got a nursing home to start a vent unit and take on his care closer to his home an hour away. Very few places can or will do long term care or total quads. She has adjusted and I am better now than I was a year ago. She is my hero.

Don't give up on him, but do get a life for yourself where more of your needs are met. Get away from the situation for a vacation when it gets too bad to stand. I take a week's trip with a girlfriend every year and have a few timeschosen to stay home for several weeks and not go to the hospital at all when I felt like I was so depressed I was feeling like suicide. Get some depression medication. Talk to anyone who will listen and give you emotional support. Pamper yourself some. Find some activity that lets you escape for a while. You can take some time off and still not abandon him. I have kept in touch with John by telephone every day when things were too much for me and I needed to stay away from the hospital. He understood even if the separation was harder for him than having me there with him. If your man really loves you too, he will want to protect you from his suffering and not make you take it on with him all the time. He will want you to have a life that doesn't make you give up all the things you really enjoy that he isn't able to participate in. I found a church group whose services have helped me in my journey even though I am not a traditionally religious person. I went to belief.com and took their basic philosophy test and started going to the services of the group I seemed to fit - the Unitarians.

I don't know what the solution is for the sex need. I masterbate and read romance novels a lot more than I did when I had a husband who wasn't paralyzed. I keep very busy with outdoor things like garden and pets. I am gradually finding a few friends who will do social things with me. I like my job. I hug my husband when I am with him and just stand with my arms wrapped around his neck . I can't get very close to him because of the small size of his bed and all the contraptions attached to him and to his wheelchair, but I do the best I can. I can't give him a real husband/wife kiss anymore because of the vent and the danger to him of giving him infections and pneumonia. I kiss the top of his head.

I would never urge a young woman with her life before her to take on a situation like a marriage to someone who is paralyzed unless she had lived with the situation for a period of years and really knew that she could be content and fulfilled in that situation. You are not awful to want to get out. You are not awful to want more. I, at least had more for a lot of years. I still feel a lot of what you are feeling. You don't have to totally abandon him if you want a more normal life, but your relationship to him may need to change. I am lucky in that I can talk to my husband about all my feelings, and he has been strong and good enough to let me. Can you do that with your young man? It makes a huge difference. John has urged me to divorce him and find someone else. I have wanted to sometimes, but I just couldn't be happy doing that although I know a much younger couple who did that. The woman is totally paralyzed and her husband and his new wife visit her with the couple's children and they all seem to love each other and help each other.