[Captain Pike]

Every time I visit this site, like over the past six months, I get really depressed and have to go away. I used to post here a lot, and reading other peoples stuff -- I found it really helpful here.

Now I get this feeling of dread... all bummed out -- don't wanna read about people's problems and how they coped with it. ...

I think I'm in denial. It's coming up on three years in April, maybe inside I figured I'd be twitching my toes by now, or, like walking with parallel bars. I thought I was facing the stuff. I suppose there are various levels of acceptance. I'm getting really fat and dependent on the helpers and I don't seem to be motivated for therapy. Probably nothing new. Just forcing myself to say something.

[kewlcatkez]

Captain Pike, on Mar 14 2008, 11:11 PM, said:

Every time I visit this site, like over the past six months, I get really depressed and have to go away. I used to post here a lot, and reading other peoples stuff -- I found it really helpful here.

Now I get this feeling of dread... all bummed out -- don't wanna read about people's problems and how they coped with it. ...

I think I'm in denial. It's coming up on three years in April, maybe inside I figured I'd be twitching my toes by now, or, like walking with parallel bars. I thought I was facing the stuff. I suppose there are various levels of acceptance. I'm getting really fat and dependent on the helpers and I don't seem to be motivated for therapy. Probably nothing new. Just forcing myself to say something.

Hello,

I have to say that I often get this *thing* which catches my breath, I catch myself in a train of thought or 'behaving' in a particular way - or an image of my for example in a shop window and its like I have that heart sink moment...not sure how else to explain it...I too have had this type of thing, not sure its anything like what you mean, spose its all individual...but I have been increasingly getting it..

For me at least it is motivated by the fact that I feel that Society and even some people who I am acquainted with and perhaps some family think that I should be doing more...Someone recently commented that they "never thought they would see me GIVE UP"...

What they mean is that I should be hauling my useless legs around using crutches and every Brace and HKAFO etc etc... *EVEN THOUGH I DISLOCATE my shoulders, elbows wrists etc etc...doing it...Not to mention that it is't really doable anyway...

But, even though I know the facts it makes me feel that I am failing myself and them or at least their belief of who and what I am...I mean every time they hear of someone walking after eating this that or the other or another who did this that and the other and was free of dislocations, well it makes me feel like I failed...like I am choosing to be this way...Even though I can't recall quitting being something I chose or did..

For me, I dislocate every day numerous times no matter what I do, and to add to that by pandering to others perceptions and needs for me to fulfill, is not going to make my life any better nor that of my family, my kids...

Anyway, sorry if this doesn't help at all, not sure why I wrote what I did. All I can say is that no matter how motivated some of us are or will be, it will happen if it does and won't if it won't you know? So try not to be too hard on yourself. Yes, you may find improvements with motivation, but for one who does there are many who do not. Please do not let that prevent you from coming here..If you find MY or anyone's posts too much then skip em!

I wish I had the answers - hell I want them for my questions! LOL..But I do want you to know that I for one will listen if and when you want to talk/rant/laugh/cry...Even though I don't "know" you, I feel connected to/through this place...

Hoping for brighter times whatever that may mean..

Take care,

K

This post has been edited by kewlcatkez: 14 March 2008 - 11:38 PM

[Captain Pike]

Yeah,... except... I can tell when my wife is mad, she'll say something on the phone to someone else like this: "when they get a cure for this thing, who do you think they will be asking to be part of the project? I'll tell you who : the people who are really working hard in physical therapy... not the people who are home watching TV!

That always scares me too.

I tried to get involved in that project undertaken by Dr. Carlos Lima of Portugal, where they use your own nasal stem cells are to affect a repair on your cord. The answer came back later -- I WAS TOO OLD FOR THE EXPERIMENT

ouch

[kewlcatkez]

Captain Pike, on Mar 14 2008, 11:59 PM, said:

Yeah,... except... I can tell when my wife is mad, she'll say something on the phone to someone else like this: "when they get a cure for this thing, who do you think they will be asking to be part of the project? I'll tell you who : the people who are really working hard in physical therapy... not the people who are home watching TV!

That always scares me too.

I tried to get involved in that project undertaken by Dr. Carlos Lima of Portugal, where they use your own nasal stem cells are to affect a repair on your cord. The answer came back later -- I WAS TOO OLD FOR THE EXPERIMENT

ouch

Well, My advice for what its worth is that you probably got a lucky escape as experimental stem cell therapy is unregulated etc etc... Also, as far as what your wife says,it will actually be NEW injuries who get the best shot and perhaps the first at any "cure"...That is something to tell her/others but also can/makes you/us feel like crap, Perhaps those who are critical should be sat in chairs with legs and arms weighted wearing mittens etc etc..well worth a thought for the laugh the picture ot makes brings..

All I can say Captain Pike is that research is being done and progress being made...so hang onto that, However, please do not beat yourself up about the therapy..it can only do so much ya know?

Not sure what your weather is like there but here its windy raining and awful..and it makes us allfeel like Hibernating...Perhaps when better weather comes, and more Vitamin D through the rays, motivation will follow..

Hang in there, you are not alone, no consolation I know, but its all I have!

Take care,

K

[Texaswheelz]

Not to pee on your parade but after 3 years if you haven't had much return or no return at all, it probably isn't coming, it doesn't matter if your in therapy 10 hours a day, if it's not there then it's not there.

2 1/2 years after my injury i did go and do the experimental thing and then went and did 12 months of 8 hour a day rehab...nothing came out of it, sure i was stronger in the muscles that i already had, but i didn't gain anything back. This was paid for by having local charity events, friends and family of friends pretty much paid the majority of it, which was quite high. I haven't spent much time back in my home town since my year of rehab after the experimental surgery. At first i always felt like i let the whole town down. I couldn't bare to go back as a failure, at least that is what I thought ever one would think of me. i don't feel that way now, but for about 3 years afterwards i did, it is a hard thing to get over. Before I went there was a lot of hugging and crying and praying going on for me, we would put on a dance at an old barn on some ones farm and half the town would show up, we would have auctions to get a high school kid for a day to work for some local resident or business man for the day, all of that for me and i didn't get anything out of it for them. It was hard, but i finally realized that there wasn't anything more i could do.

Both of my younger brothers were still in elementary school at that time and since I had graduated and moved out and on with my life i was never really around them much any more. About 3 years ago, which was 10 or so after the me banging my head against the brick wall, I moved back nearmy family and was around them again. This was the first time either of them had been around me other then on holiday's since I had moved out and they had grown up. They still saw me as this super hero of a guy who would stop at nothing to walk again. It was a big surprise to them that it was no longer at the top of my to do list. That i had finally accepted who i was and what i was and wasn't capable of and moved on with my life to do what i could do. I never thought of how they saw me until then and they had never thought of how i actually lived until then, it was a big suprise to both of us. One was a senior in high school and the other had graduated 3 years before, we were all different and I knew they had grown up, but they still thought of me as who I was when they were little and had first moved out of the house to go to rehab and then college.

I do know where it can feel over whelming to try and meet others expectations and then the feeling of failure when your not able to, but it isn't your fault that your unable to, it would be completely different if it was something that you actually had a say in. You just have to let them know what is and what isn't. Your wife still has high hopes of you walking again, she has probably accepted it less then you have, which isn't helping you accept it either as you want to live up to her expectations. Right now the only thing you can do is talk with her about it, it's good to have hopes and reams but it's even better to see reality. Before I met my wife I had dated a girl in college, after we had gone out awhile and got to know each other and be comfortable with one another the first thing she did was start researching all the different therapies and experiments going on. She would tell me that i should do this or that or try this or that. I ended the relationship right away even though i really liked her. She wanted to fix me, i didn't feel i was broken. I keep a eye on what's going on out there, my wife probably does to, but she has never brought up me going and doing this or that to try to walk, she accepted me for who i am and who i was going to be down the road, without that we wouldn't have the relationship we do.

[E-DOG]

YO CAPT'N
I've only been in the "chair" a while now, 10 months T-4/5 incomplete so I can't speak from a whole lot of experience. But what I've heard from people who DO have a lot of "sittin down" time is that things get easier for us, but they never get easy.

There was a time when a good day for me, was a day that suicide didn't cross my mind. Now I rarely, if ever have those thoughts. Good thing too, as I'm a avid collector of edged weapons.

My old boss came to visit while I was in the hospital. First thing out of his mouth was "Soon as yer outa' here son, I want yer fat ass back at work! I don't care if you have to do it from home, two, three hours a day. You WILL be back on the fone!" (I was, and still am a telemarketer)

He knew then, that I was gonna need to stay busy. Keep me out of my head. Cuz goin' inside my head was like going into a bad neighborhood. Not a good place!

Hope is terrific, but I won't bullshit myself. I have a little motor function, some sensation, but not enough to write home about. I know I'll never walk again.

I've now gotten to the point where I veiw this whole wheelchair thing rather philosophicaly. I mean shit, I DID have fifty able bodied years. An' hell, I never liked walking much anyway!

Perhaps some volunteer work, something so you can feel usefull. To yourself, and others. I don't know, you just seem kinda down is all. Hope this helps a little. If it doesn't apply, let it fly.

E-dog

[itsjustme]

Hey Cap!

I just returned to Apparelyzed after a little break, several months. I did check in every single day and then for some inexplicable reason I didn't want to, just didn't want to, just kind of dreaded thinking about it so I didn't. For one thing I got really involved in the real world and I can't explain that either. It's different than just sort of existing among the people and events around you. I think, looking back at the first 3 years of being in this chair, that I was sort of in a bubble. I mean I was with family and friends and I went places but being in the chair seemingly kept me seperate, alone. Maybe it's a deeper acceptance. I am actually finding fulfillment in the things that I am doing and instead of being constantly aware that I am PARALYZED, I am just doing stuff from a chair and accomplishing stuff that I wasn't a year ago.

But I have to say that after being away for while it's kind of like being away from home for a while and coming back. I scanned down the list of posters and noticed new names and missed seeing some of the ones who, like me, were really active a few months ago.

I always, always tried to welcome anyone who was new to the forum because this community of people has meant so much to me. I was really alone in my paralyzation until I found all of you and got some perspective and insight.

So, hello old friends and new faces. CP just do what you gotta do. If you feel the need for a break, we'll miss you for a while but come back because this is a great home and bunch of people to come back to.

Just one last thought...I've lost 100 lbs. since Jan. 14 of last year. I'm not stuffing my feelings down with food anymore and I feel so much better physically and mentally. Food has ALWAYS been my drug of choice. To this day, if I'm jonesin' for something, usually something with fat and sugar, and I put it in my mouth, I absolutely get a physical release or relief of some kind. It's kind of like a tranquilizer. My nerves calm down for a while. However, if I give in and eat something that I shouldn't, it's just makes me want that same thing, that same feeling the next day. It must be a feeling akin to a drug addict wanting that same feeling the next hour, so for that reason I try not to indulge even though on the eating program that I am living on I could absolutely have some things if I just plan for them. Please go to Health Issues and read my post about how it all started last year. Simon also posted some useful information in that post.

[qbounce]

Hi cap'n and all!
I'm NOT going to go into my problems w/ you all here. . . except to say, yah, I've got 'em too. I just wanted to say that I've found a kind of solice here on this site. I feel like you all are my extended family whome I can go to for a bit of free advice with a bit of empathy included.

I've recently gone through some acceptance issues too, except I'm still one of those that doesn't FEEL disabled (but I sure as hell look it ).

Anyway, I hope you get out of your FUNK soon, and whether you stay aboard or you jump ship, just stay afloat!

[nomis]

Hey Captain, if you're still around.
I drift in and out of interest and contact with the disability world. I think it's a natural flow and perfectly healthy. Likewise with our ups and downs.
To me, it sounds perfectly ok if you've had a gutsful of spinal injuries talk. Your mind probably wants to focus on all your other life involvements for a time. If you're like me, I can only absorb so much of one thing before needing a break.
I suspect some change must be brewing in your mind. It sounds like you're looking for some new excitement/interest in your life.

[ParaforGod]

Hi Cap you said its coming up three yrs. in April. Thats not a long time at all. Aug. will be 8yrs. for me but as I said I lost my husband in the accident and I couldn't deal with my being hurt for trying to deal with his death and as I said he was already buried when I really came to enough to really know what was going on.
I don't think I really started to deal with my injury in someways until about three yrs. ago. I think that anniverary date will always be hard in someway. Each year its not as hard as the year before for me but it still brings up the memories of those feelings I felt when it first happened. I think this is normal but sometimes family just don't understand. On the date of my accident my daughter would say Mom you can't sit and dwell on it all day. Then I heard Christopher Reeves say one time that it had been seven years since his accident and he still on the date of his accident relived it down to the minute of the accident. He said he would think I had six hours, then 3hrs, then 2hrs, then one, then the accident. I remember thinking finally someone who understands.
Summer is hard for me because May was my husbands birthday, June was our wedding anniversary, then August the accident. Sometimes I wont even know what the date is and I will feel so down for days. I have learned to stop and think whats going on, whats coming up, whats the date and sure enough its usually some date that has meaning.
I also have had to take a break whether its being overwhelmed with sadness or just busy living life and sometimes from being physically sick. If you need a break its ok. I just hope you return. Aftere all you are part of the family.

[Tired of hurting]

I can relate to hearing your wife talk on the phone. For some people they think we just don't try hard enough. I find myself beating myself up. I have tried and I still do. A friend was fixing my roof yesterday...And said How long? I said 3 years. His comment was Oh you'll get better. I wanted to scream at him! IM NOT GETTING BETTER! I don't know why I'm so frusrated now...You'd think I'd be getting the idea. I feel for ya... PM me if you want to talk. I THOUGHT THIS HAPPENED THE FIRST YEAR. Can you get out of the house by yourself?

This post has been edited by Tired of hurting: 19 March 2008 - 10:25 PM

[PlumasGal]

Captain Pike-

I am a friend of someone who was paralyzed last June and have come to these forums frequently to educate myself as to what she may be going through etc. in order to be a better friend to her. She still has not visited this site (due to her own psychological resistance) but has used some of the information I've gathered from here and has even called me and asked me to find out something from this site. This is an amazing source of information and inspiration. All this time I have only lurked but your post has compelled me to actually register.

Your posts were among the very first I read and your voice has stuck in my head this past year for many reasons and I've been wondering how you were doing. I think all of us, able-bodied or otherwise, don't realize most of the time the impact we have on other people, how we can inadvertently touch or inspire others. You may not be aware of it right now, or think it's not worth much, but you have a talent for communication and a very rich personality.

Even the strongest of people are not strong all the time. Nomis is right IMO, that these difficult down times are often the jumping off point into something new. It's that old adage "the darkest hour is before the dawn". Sometimes our psyches are regenerating during those spells of depression, though we are too depressed to see it at the time.

I am legally disabled due to an immune system disorder contracted 15 years ago. I know, to some extent, what it feels like to have the familiar world/life seemingly unravel. One of my Coping support groups had a Buddhist facilitator and something she said, a Buddhist saying, really stuck with me through the years...that it is as important to know how to be weak as it is to be strong. I found some balance with that thought. I'm no assuming that this will help you the way it did me, let's just say I'm sharing what little I have.

Bottom line is you have touched me and helped my friend by proxy and I feel compelled to let you know now that you are here on the forum. You have mattered to me and I don't want you to give up. You are such a dynamic personality!

I think it is very common for those of us who participate in forums to have an ebb and flow with our interests, with what we have to offer, with what we are seeking. That's been my experience anyway. Don't they say that Home is a place where when you go there they have to let you in? Isn't this place kind of like that? I know it's not my place to say it, but it seems to me you have a Home here, that will be here when you want or need it.

I hope things improve for you. Please never underestimate the abilities inherent in your soul, we all see how special you are.