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Quadriplegic & Paraplegic Spinal Cord Injuries > Disabled Living & Spinal Cord Injuries > Spouse & Carer's Forum
Mcowling
my husband is a t8 complete paraplegic. this sept it will be a year since his accident. how long does it take to really accepy what has happenend and stop crying when you go to bed and wake up each morning. i realize everyone is different, but can some of you old timers give me some insight. thanks to all you sweeties who help me get a glimpse of the future .
Texaswheelz
Like you said, everyone is different. Some never accept it and move on with life, for some it takes years, some months, some weeks and some right away. Some just need a dose of reality to slap them in the back of the head and tell them to live life.
Denny
Encourage you husband to join this group, talking to people in similar situation can help. Each person deals it different. It is important for him to know that paralysis not end of the road.

I am T4 complete, working full time, married and living happily, active in wheelchair sports and other activities in spare time.
Meadowlarkmark
I have noticed this with a lot of the 'para's I have known and this behavior has always blown me away--seems the 'para' personality is either boob or super-crip--I know this is an over statement but as a quad i could do so much more if i had my hands back--just my hands and I'd be happy...not that I am not now, I am but what I could do with my hands.
chickadee
QUOTE (Meadowlarkmark @ Aug 20 2009, 09:24 AM) *
I have noticed this with a lot of the 'para's I have known and this behavior has always blown me away--


I think this is maybe partially because it's the 'so close' issue - I'm so close to it being all okay... etc.

I'm about nine months out, and I'm just now getting used to it. I would probably say I'm just entering the acceptance phase. I did get a good dose of reality while in the hospital - I wound up in a stroke-specialist neurosurgery, and realized that having a stroke would be worse for me. I saw the strength and the tenacity of these folks, and what they'd have to gain back. What was cool, is that they welcomed me into their fold for their support groups, they welcomed me into their rooms for a chat, etc. Granted, I was still really doped up and had generally a positive outlook, both at the hospital and at rehab.

Once I headed home, reality set in (plus, some other things happened - I lost my job, etc.). I cried all of the time, being all alone without nearly as much support. I live alone, and my family lives about 3 hours away. I think my friends saw this and started coming by more often, inviting me out, etc. After awhile, I realized that distractions, education, volunteering - they were making me mentally healthier.

I'm still not all the way yet, but I don't cry nearly as often - maybe once or twice, when I'm frustrated, in too much pain, or overtired. And I'll agree with Denny, in that when I joined in on this forum, not only was there TONS of answers and good advice, but a camaraderie, and a couple of folks that I can talk to with the same injury as me.

Good luck and lots of hugs to both of you.
Illinois Boy
Happy....... Never happen completely......

Dealing with it may come with time........
I just try to keep busy and enjoy what I can.......

Jim
topperf
QUOTE (Meadowlarkmark @ Aug 20 2009, 04:24 PM) *
I have noticed this with a lot of the 'para's I have known and this behavior has always blown me away--seems the 'para' personality is either boob or super-crip--I know this is an over statement but as a quad i could do so much more if i had my hands back--just my hands and I'd be happy...not that I am not now, I am but what I could do with my hands.


- I know exactly what you mean, I miss my hands working properly, so much.. So very much, in fact I try to think about it as little as possible cause when I do (or focus on it, might be a better way of putting it) it is the one thing that saddens me the most.

Having said that, I guess I would also feel very sad, had I kept hand function and 'only' lost mid-chest down, it is still a major, major loss for most people, and I acknowledge that.

But man, do I recall the boys in rehab who had been drinking and driving and felt really sorry for themselves - I guess my compassion was hard to spot.

I'm rambling, sorry - @Mcowling - I'd say the first 18 months was the hardest for me, hopefully he begins to smile some more, soon.

-t-
Heather1984
Each person is different and they deal with things in different ways. I have been in a chair a little over a year now and I still have my bad days. I'm sure people who have been in one longer still have those days. What makes me feel better is when I learn how to do something new. I was so independant before my accident so asking somebody for help makes me so mad. Let him do as much as he can by himself, once he realizes he can still do things by himself it should help him out. He will learn different ways to get things done. In time it will get to be much easier for him. Make sure he knows it is ok to still have bad days but try to make him realize his life is not over just because of the chair.
davjed
Happiness is a state of mind just like contentment. I may not be happy all the time but I have grown content with where I am and what I have......
SnoFl
Hi Mcowling
17+ years post here
For me, I stopped wanting to be happy and found joy in smaller things in life. No longer could I hike through a state park, but taking a healthy pride in the beauty of a day or singing a song while poking at a keyboard. Currently, my OT is re-teaching me how to write with my right hand. My joy is not the result of what I see on paper, but the ability to hold that pen without dropping it. Hope I explained that well enough. Anyway, it took me appx. 12 years to adjust to a more content life. I think laughter is the best medicine; and, you can find a lot of that on Apparelyzed.

The best to you and yours.
Trinity
Hi
I'm not exactly an old timer but I still have an opinion! I still have good days and bad days, thankfully the good outweigh the bad but it's amazing some of the stupid little things that set me off sometimes. Am I happy with my situation? I think the answer is no but I think I have accepted it, for the main part anyway. I still have days when I completely hate everything about it.

Going back to work was the key thing for me, it has given me a sense of purpose plus something to fill the long days with. I have tried a few things I enjoyed pre sci and I must admit I have not really enjoyed them as much as I did, I need new challenges.

The first year is definitely the hardest
Fairygirl72
Hi there. My husband is a C4-6 and just had his two year anniversary. I still cry but not nearly as often. The first year was the hardest time of our lives. The disbelief is intense. I still from time to time say...I can't believe this happened to him...not my husband...not our life...but it's not as often. Luckily for me, my husband is extremely positive and our 3 little girls keep us going..can't help but smile when they are around...lol We really are happy 95% of the time now. Just let yourself have your time to cry...I did a lot in the beginning but after a good cry make sure you focus on all the good...

Wish you lots of luck...if you need to chat, just send me a message!
Keleigh
nomis
As time goes on, most make the switch from what they've lost to what they still have and are grateful for. We all travel at our own pace and for our own reasons. Once the despair of the losses have settled in, a T8 in a married supportive relationship has much to look forward to and be grateful for. Good days are ahead.
PPL
QUOTE (trinity @ Aug 21 2009, 08:39 PM) *
Hi
I'm not exactly an old timer but I still have an opinion! I still have good days and bad days, thankfully the good outweigh the bad but it's amazing some of the stupid little things that set me off sometimes. Am I happy with my situation? I think the answer is no but I think I have accepted it, for the main part anyway. I still have days when I completely hate everything about it.

Going back to work was the key thing for me, it has given me a sense of purpose plus something to fill the long days with. I have tried a few things I enjoyed pre sci and I must admit I have not really enjoyed them as much as I did, I need new challenges.

The first year is definitely the hardest


You didn't write much but it meant alot to me anyway. Thanks. After 14 years of stay-at-home-momming and managing this (stupid) (and incontinent) sci lifestyle, I am freaking out about going back to work or not (I can't don't want to really do the work I did pre-sci), just how I should define and reinvent my life at this point. I like to be positive and not make excuses but I'm tired of EVERYONE saying "and why can't you do that?". Sorry, I know we humans are capable of Anything We Set Our Minds To....but frankly, my time spent 1) maintaining myself regularly at a basic level 2) maintaining some degree of neatness and civility and food! in our home doesn't appear to leave me much time to enrich my life with work or even hobbies.
How have You found it possible to work, search for that work when so many things fall to trial and error? I don't want to just stay still but I'm not finding any 'role models' of long-term paraplegic women, 50 years old finding a satisfying non-isolated way of bringing sustainable meaning into life.
How hard was it for You to find a pathway back to work? How do you integrate it into your routine? What's the time balance?
Any insight is sooooo greatly appreciated!
Thank you,

PPL

QUOTE (topperf @ Aug 20 2009, 07:46 PM) *
QUOTE (Meadowlarkmark @ Aug 20 2009, 04:24 PM) *
I have noticed this with a lot of the 'para's I have known and this behavior has always blown me away--seems the 'para' personality is either boob or super-crip--I know this is an over statement but as a quad i could do so much more if i had my hands back--just my hands and I'd be happy...not that I am not now, I am but what I could do with my hands.


- I know exactly what you mean, I miss my hands working properly, so much.. So very much, in fact I try to think about it as little as possible cause when I do (or focus on it, might be a better way of putting it) it is the one thing that saddens me the most.

Having said that, I guess I would also feel very sad, had I kept hand function and 'only' lost mid-chest down, it is still a major, major loss for most people, and I acknowledge that.

But man, do I recall the boys in rehab who had been drinking and driving and felt really sorry for themselves - I guess my compassion was hard to spot.

I'm rambling, sorry - @Mcowling - I'd say the first 18 months was the hardest for me, hopefully he begins to smile some more, soon.

-t-
PPL
QUOTE (topperf @ Aug 20 2009, 07:46 PM) *
QUOTE (Meadowlarkmark @ Aug 20 2009, 04:24 PM) *
I have noticed this with a lot of the 'para's I have known and this behavior has always blown me away--seems the 'para' personality is either boob or super-crip--I know this is an over statement but as a quad i could do so much more if i had my hands back--just my hands and I'd be happy...not that I am not now, I am but what I could do with my hands.


- I know exactly what you mean, I miss my hands working properly, so much.. So very much, in fact I try to think about it as little as possible cause when I do (or focus on it, might be a better way of putting it) it is the one thing that saddens me the most.

Having said that, I guess I would also feel very sad, had I kept hand function and 'only' lost mid-chest down, it is still a major, major loss for most people, and I acknowledge that.

But man, do I recall the boys in rehab who had been drinking and driving and felt really sorry for themselves - I guess my compassion was hard to spot.

I'm rambling, sorry - @Mcowling - I'd say the first 18 months was the hardest for me, hopefully he begins to smile some more, soon.

-t-



Hi, I appreciate what you have written here. I'm a para. It seems disrespectful for me to even say this, but I have soooo much unbelievable respect and awe for anyone living the quad-lifestyle. I mean that I hate when able-bodied people say things like that to me about how I (appear) to deal with things and I don't mean to sound that way to you. It is a pain in the ass to hear anyone complain but the idea of paras complaints being heard by quads is truly a maddening concept. Shameful. But it's probably not intended that way. I guess it must be a stupid part of human nature to think in terms of 'what if' and 'if only' but You are absolutey right about the difference between not having hand-use vs. not having leg-use is definitely absolutely A Very Big Deal. If you ever hear me whining about no legs while I've got these hands, please kick me hard and shoot me too. That said, for me, no matter who you are...injured, aged, etc. the bathroom issues and incontinence and managing all that and needing outside help managing that is the greatest loss for a human life. For me, that aspect gets inside my head so much yet I don't think most people realize it or are able to have anyone to talk about it with. Sometimes it seems every joke or ultimate comment on tv and films is about being able to wipe your own ass or not. Hearing that and knowing I am already well on the road to being in that final ditch is the most difficult thing. Maybe it's a little like that when you hear handy-paras complain about loss....knowing that you're already further down that 'food-chain' of ability than they are. Ugh...I'm so grateful the world has so many distractions to keep me from writing or thinking even longer about this.
Now I'm rambling but I hope you're having a spell of Good News and Days.
Sincerely,
PPL
PPL
QUOTE (chickadee @ Aug 20 2009, 07:06 PM) *
QUOTE (Meadowlarkmark @ Aug 20 2009, 09:24 AM) *
I have noticed this with a lot of the 'para's I have known and this behavior has always blown me away--


I think this is maybe partially because it's the 'so close' issue - I'm so close to it being all okay... etc.

I'm about nine months out, and I'm just now getting used to it. I would probably say I'm just entering the acceptance phase. I did get a good dose of reality while in the hospital - I wound up in a stroke-specialist neurosurgery, and realized that having a stroke would be worse for me. I saw the strength and the tenacity of these folks, and what they'd have to gain back. What was cool, is that they welcomed me into their fold for their support groups, they welcomed me into their rooms for a chat, etc. Granted, I was still really doped up and had generally a positive outlook, both at the hospital and at rehab.

Once I headed home, reality set in (plus, some other things happened - I lost my job, etc.). I cried all of the time, being all alone without nearly as much support. I live alone, and my family lives about 3 hours away. I think my friends saw this and started coming by more often, inviting me out, etc. After awhile, I realized that distractions, education, volunteering - they were making me mentally healthier.

I'm still not all the way yet, but I don't cry nearly as often - maybe once or twice, when I'm frustrated, in too much pain, or overtired. And I'll agree with Denny, in that when I joined in on this forum, not only was there TONS of answers and good advice, but a camaraderie, and a couple of folks that I can talk to with the same injury as me.

Good luck and lots of hugs to both of you.


9 months is not very long. I've been 14 years. You sound like your head is def in the right place...the Only Place I suppose, cuz what else can a body do? But, I appreciate your words and your feelings. When those 'spiralings' happen and you just feel like you'll never have a chance of overlooking it all- that is the worst. It seems you've learned very early about perspective and how important the distractions, esp. the educational and volunteering type can be. That's really good and I would say the thing i come back to the most even after all these years.
I'm having a little 'relapse' about finding my tiny window to fit-in somewhere physically and mentally in the outside universe right now. Your 9-month comment meant alot to me and I am wishing that you have many bright spots and distractions immediately!
Sincerely,
PPL
PPL
QUOTE (Denny @ Aug 20 2009, 03:22 PM) *
Encourage you husband to join this group, talking to people in similar situation can help. Each person deals it different. It is important for him to know that paralysis not end of the road.

I am T4 complete, working full time, married and living happily, active in wheelchair sports and other activities in spare time.



Hi Denny,
Your words really resonated with me. Sounds like you've achieved alot and I wish I could understand how you manage
1. working
2. marriage
3. happiness
4. sports
5. spare time??!!!
I'm trying really hard to figure out some enrichment for my life beyond my personal healthcare maintenance and managing my home life with high-gear-career-husband and 14 year old son and 2 doggies.
I've been at it for 14 years, quite successfully, but I'm at such a powerful crossroads of the mundane or wither and die.
How many hours are you in your chair per day usually? How do you not get completely exhausted and frustrated by doing so much but slower (I assume) than the able-bodied around you in all these activities??
If, maybe your wife is more responsible for home and that sort of 'maintenance', maybe it's a ssimple as you being out and thriving on that. Maybe I'm just allowing myself to get overly-wrapped-up in mundane (safe) boring activities. I guess i should push myself outter more but I can't seem to find an accessible-friendly-fit like that. hmmmmm.
Thanks for helping me think about this.
Sincerely,
PPL
PPL
QUOTE (Mcowling @ Aug 20 2009, 01:20 PM) *
my husband is a t8 complete paraplegic. this sept it will be a year since his accident. how long does it take to really accepy what has happenend and stop crying when you go to bed and wake up each morning. i realize everyone is different, but can some of you old timers give me some insight. thanks to all you sweeties who help me get a glimpse of the future .


Hi,
Your post is a good simply-stated, very important message. I can sense you and husband are working hard at not letting this beat you. And it won't. But I would like to tell you both what everyone probably tells you both. It will take time. That's it. Only thru a range of time can perspective come so that you can start to see the ups and downs which still affect your lives.
I've been a para woman, wife, mother for 14 years now. I hate that I know I've got ups and downs not much different from anyone else, injured or not, recoverable or not in that good times and horrible times will find me.
This is an act and journey in patience.
The crying will probably never stop. And it might very well have been there even without the injury.
And maybe crying isn't so bad anyway.
All I can suggest is:
1. Expect to go slowly and then when a little momentum and inspiration arrives at your door, you will not speed past it.
2. Because there are so many things and routines which you will discover and work out over sometime, try to identify a reasonable PLEASURE which you can concentrate on creating. Pay yourselves with that. Don't get over-ambitious about that. A small and different thing which you may have assumed was gone can really be a beacon on a dark day. If you can remind yourselves that you can still have alot of amazing things even tho you're very occupied with the necessities of daily living, your mind will begin to relax and broaden and imagine and achieve bigger things that can still be a part of your lives.
3. Try hard to NOT say No or Can't even when that seems like the only right answer. Yet, don't over-cheerlead yourselves either.
4. Personnally I've gotten sick of everyone saying I can do everything, just differently and maybe slower. I don't find that to be true in the scope of all the absolute essential daily things that take up all my time. Yes, paras can Do Anything they set their minds to but I don't really want to spend 7 times as long and risk humiliation after effort just to prove that I too can go on safari in the bush. BUT you can work SMART instead of just hard to figure out very pleasureable and sensual and even exotic experiences.
5. Being honest about what you both may really enjoy and hopefully insisting on some 'indulgence' every few days or once a week may do alot for you both. I hope so anyway.
I'm sorry I'm not really articulating this very well but I hope you know that I really believe you can get okay with all this.
I would try to laugh at the absurdness of alot of it whenever possible. Sometimes, just between you and I, I think my own husband has adopted too much a strategy of denial about obstacles and it would be better if we could have developed methods of being mad together, laughing together about our own misery at it all instead of always trying to show each other how 'strong an upper lip' we could have. I have discovered that constant front can be very lonely-making and the intimacy of really going thru this recovery/rehab/reinvention together can be where the Love and Beauty really lie for you.
Really wish I could help more,
Sincerely,
PPL
gordonr
QUOTE (PPL @ Aug 22 2009, 01:59 PM) *
QUOTE (Denny @ Aug 20 2009, 03:22 PM) *
Encourage you husband to join this group, talking to people in similar situation can help. Each person deals it different. It is important for him to know that paralysis not end of the road.

I am T4 complete, working full time, married and living happily, active in wheelchair sports and other activities in spare time.



Hi Denny,
Your words really resonated with me. Sounds like you've achieved alot and I wish I could understand how you manage



Dear PPL,

There is no magic to this. There are only a certain number of hours in the day, and there is only a certain amount of energy in each one of us. We can give one-hundred-percent, but NO one can give more than that. Beginning from this point the rest becmes a question of priorities.

I don`t know Denny, but looking at his list, I see he didn't mention kids. Just that (assuming it wasn't an omission) would explain a lot. Any childless couple has a lot of spare time. Beyond that, there is the gender difference. An AB woman, working or not, in a relation with a disabled man, will normally (and I am making no judgements here) pick up most or all of the slack on the domestic front. Less if the guy is at home, but more if he is not. And many working wives of AB men do the same thing, so the handicap is almost irrelevent as long as the para is handling his own care.

This is your own guess, right?

QUOTE
If, maybe your wife is more responsible for home and that sort of 'maintenance', maybe it's a ssimple as you being out and thriving on that.


So let's just say that this particular couple has found a very favorable way to set their priorities and hopefully Denny's wife is as satisfied as he. Very likely she is.

And now let's contrast your case. First, this time YOU are the woman. And although this might sound cruel, the standards that a woman sets in domestic maintenance tend to be really silly, on top of which you have to work twice as hard as an AB woman to acheive these silly goals. Inevitably, if you want to prioritize your life in such a way that you can do something else besides housework, you will have to radically change your standards.

Let's see:

QUOTE
I'm trying really hard to figure out some enrichment for my life beyond my personal healthcare maintenance and managing my home life with high-gear-career-husband and 14 year old son and 2 doggies.


1. High-Gear-Career-Husband can learn how to operate a microwave oven and wash his own socks.

2. 14 year old son... DITTO! (this whole midlife crisis thing stems from the fact that the kid doesn't need you the same way and you will be doing BOTH of you a favor if you push his natural progress towards self-reliance and responsibility forward rather than delaying them for your own need to feel useful)

3. Two Doggies? Give me a break! (Dogs are for people with nothing else to do. Couples without kids. Old folks. Gimps living alone. (They are apparently also good with curry on rice.)

But there is one point that you have to wrap your head around: Your husband and son will not pick up the slack in doing the domestifc tasks the way you want them done. They will support you. They will learn to fend for themselves. But they will not maintain a femininely acceptable home. Not ever. So don't even try to go there.

However, from this starting point, there is a lot you can do. In fact the sky is the limit. Just remember to work in YOUR limits. I for instance am very active, but I am active in blocks of about four hours. I know that many people here spend all day in their chairs, but I am lucky enough that I do not have to. I transfer in and out of my chair easily, and I always lay down for ten minutes or so ever few hours in order to reestablish normal circulation and relieve pressure.

People say a lot about adapted workplaces. Is it too much to ask that a para have access to a bench where he can stretch out flat for twenty minutes on his lunch break? Christ. How obvious is that?

Anyway, I see you are a new member. Welcome aboard. Open a thread about this post-kid-back-to-work-fifty-year-old-woman thing and I'm sure we will get some good discussion.

Best Regards,

Gordon
CollegeGirl
QUOTE (Meadowlarkmark @ Aug 20 2009, 09:24 AM) *
I have noticed this with a lot of the 'para's I have known and this behavior has always blown me away--seems the 'para' personality is either boob or super-crip--I know this is an over statement but as a quad i could do so much more if i had my hands back--just my hands and I'd be happy...not that I am not now, I am but what I could do with my hands.


Yes, this is my boyfriend's outlook completely. If he had use of his hands there is soooo much more he could do! It's amazing to see see how these two little parts of your body make so much difference. Of course he would love to be able to walk again, but all he really wants is use of his hands back.

QUOTE
Hi, I appreciate what you have written here. I'm a para. It seems disrespectful for me to even say this, but I have soooo much unbelievable respect and awe for anyone living the quad-lifestyle. I mean that I hate when able-bodied people say things like that to me about how I (appear) to deal with things and I don't mean to sound that way to you. It is a pain in the ass to hear anyone complain but the idea of paras complaints being heard by quads is truly a maddening concept.


PPL, I know what you mean here about para's complaining to quads. My boyfriend has a lot of people complain about things to him, and while he is nice and listens to their concerns and offers his advice, he has often said to me they think they have it so bad, but just look at him, because he's much worse and not complaining (not his exact words, but close)

I have never said this to him, and he might read it on here, but I have always thought of it this way: 1. Yes, his situation (being a quad) is heart breaking. I feel for him every single day. However, he still does not have it as bad as he sometimes seems to think. I see AB who are physically able to do anything they wish, a fully functional body, but their brains are not. People who have down syndrome, cognitively delayed, or any like this. I went to school with a boy who was not paralyzed but mentally couldn't work his body so he was in a wheelchair. Someone not only had to feed him but they had to physically open his mouth for him and help him chew. While quads are not about to walk or use their hands, etc. I look at Chris and think that he is so lucky to have not gotten any serious brain damage in his accident and that he can function normal mentally. 2. He gets angry that ABs complain about issues, but sometimes I want to remind him that he was once complaining about silly things also.

I guess I'm just saying that there is always someone worse off then you, no matter how bad you think you have it, but that doesn't mean that you can't complain or feel bad about your situation. I don't see anything wrong with a para complaining to or in front of quads and using the whole "suck it up, we have it much worse than you" isn't really fair.

I hope all this makes since haha....I tried wording my thoughts as best I could.
wheeliebear75
19yrs post for me.......so I don't know if that makes me an "old timer" or not; I still have bad days......but they're outnumbered by the good, my lows though they still happen are not AS low......& I've learned to find happiness & joy in "the little things". When your hubby starts to have more good days & less days where he feels depressed will depend on him & his ability to cope as well as things that can be done for him to to help. Finding things to do & to stay busy is really paramount.......can not stress enough about not being a bump on a log. He may find some comfort though just in reading the posts of the rest of us........there is a certain amount of comfort just in knowing you're not alone.
bradgrove
I had my accident in March last year. I have been pretty good about the whole thing since day 1. I decided that shit happens and to move on with life. I've had bad periods when I went from hospital to rehab then home but it was because I wasn't used to the change.

I've been home since last October (almost a year) and have been back at work since two weeks out of rehab, go to the gym 3 days a week, play sport, go camping and motorbike riding. I'm always out wth my mates, who have been great, and have actually gained a lot of new friends. I am stronger than I was before my accident, both mentally and physically, have a larger support network and have actually been out and had people approve me who I don't know but they know me.

It took me a while to get out of the house after I got home but once I got my car and had more independance and with a lot of pressure from friends and family, I have gained confidence to go out. The aussie way is to have a laugh and make jokes about our problems. This sounds bad, but making jokes about the accident and disability with my freinds has allowed me to open up and talk to people about things and has also made strangers more comfortable approaching me and having a chat.
irish
QUOTE (Mcowling @ Aug 20 2009, 08:20 AM) *
my husband is a t8 complete paraplegic. this sept it will be a year since his accident. how long does it take to really accepy what has happenend and stop crying when you go to bed and wake up each morning. i realize everyone is different, but can some of you old timers give me some insight. thanks to all you sweeties who help me get a glimpse of the future .

First part is shaking off the institutional attitude. I spent my first 6 months in hospitals/rehab and I needed it and the people were great, but it was still institutional. I'm about to celebrate(?) my third anniversary post sci and am still having a pity party every now and then. Ususally when I concentrate on what I can't do (walking, hiking, running, etc., all of which I loved and are just not the same in a chair), and don't challenge myself to do stuff I can do. Driving is my #1 pleasure cause I'm just like everyone else. People are generally great to me but I must say that I kind of slack off when I think about the hassle of getting in the van, transfering to the drivers seat, transfering from the drivers seat back to the chair, going into the post office, getting the mail, going back to the van, etc., etc., etc., etc. See, it sounds like a lot of stuff, but probably takes 5 minutes of less, which in a lifetime isn't very much. I've figured that the inconvenience of sci probably costs me from 1 to 2 hours per day plus workout time. Add another two to three hours a week for bowel program and 20 minutes a day for bladder program. Sooooooooo, you get up a little earlier or stay up a little later. I'm retired, so my time is my own and that helps. Don't know if I'd want to hold down a job, but people do.
I really think my wife's part in this is rougher than mine, because she needs to be there when I need her. She's gotten really good, however, at reminding me (sometimes not too gently) when I become a burden. That is, when I ask for help when I don't need it or slack off on things I can really do. With a high t injury, hubby should be able to do quite a bit, but not if you enable him. I have begun working out at the Y three days a week and it really has helped, not only on the strength level, but also the allocation of time and need for activity.

Back to your question, when will it get better. Barring unforseen injury or illness, it's up to you guys. Have a good cry every now and then, but your choices are few. Either accept what it is and adjust to it, or be upset and unhappy. When you really think of it, you don't have a choice. It will get better, not because it will be great (although it might), but because it was worse.

good luck and hang in there (you really don't have much choice)

irish
carole338
2 ½ years with SCI, T10-L2, incomplete. I seem to be going along pretty happy and then POW, a bathroom accident or a fall and I’m crying and depressed again. Antidepressants help but I take them at night so I can function during the day.

Good luck. It does take time.
Yasko
Yes, we are all different, different injuries, attitude, mentality, family & friends support, etc., but for the start hook him up to this forum and if possible, have him do something constructive on a daily basic. Work therapy helps a lot!
Good luck to both of you.
Scribbler
Well I'm definitely an old timer as I've passed the 50 year mark as a C4/5. Although I agree with virtually everything members have said there's something no one has hit on. But first let me explain something.

Before my injury I'd never seen anyone in a wheelchair. It first hit me that I'd be like this the rest of my life when I was stretchered into a Ward full of SCI guys. The guy next to me couldn't turn his head or move a muscle. the guy opposite told me he'd been injured during the War, which had ended less than 10 years ago.

Because most of the guys were like myself, ex military there was a great camaraderie amongst everyone. Even though you were flat on your back looking at the cracks in the ceiling, everyone encouraged and supported each other. You'd be chatting and joking with someone down the Ward for 3 or 4 months but couldn't see him. There was just as much banter amongst us then as there is in the joking threads here.

When one guy couldn't get to Physio because he'd pooped himself, he told the angry Physio, "Sorry but I had an accident". A wag on the Ward quickly replied, "He did it on purpose", which had everyone laughing, even the Physio and the poor guy.

We set ourselves small goals to achieve, like, who would have a pillow under their head first, and bet small tubes of smarties on each goal. The most bizarre was who would have the least residual in their bladder once the catheter had been removed for 3 hours.

I know these might sound stupid or trivial, but they kept everyone's spirits up, so I didn't see any depression. There may have been the odd tear now and then, but that's only natural. I found my experiences on that Ward have helped me cope with things throughout the last 50 years especially as I'm the last survivor.

The thing that hasn't been mentioned is this: - Society has changed since then. Back in those days, when the Physio told you to be there at 2 pm, you just went. It was quite a long push, which they made you do yourself, but if you came up against an incline a para would help push you up it.

Now a days people have the right to refuse Physio or refuse anything, which a lot do. A Sister I know on an acute SCI Ward told me she sees patients leaving with only 50% of their full potential, so I think the changes in Society haven't equipped some people with the capabilities to deal with their injury as well as they might have.

We all have our bad days, but so do AB people so we all adapt differently and at different speeds.

When I read some of the posts here I feel so sad. People don't realise just how lucky they are to have this Forum plus all the equipment and gadgets that enable SCI people live a better quality of life.

When I was injured there were no computers or Forums like this to gain information or make friends. There were no mobile phones; I couldn't even use an ordinary phone. There were no electric wheelchairs plus access into places was non existent; there certainly wasn't any disabled toilets anywhere; just a handy bush. smile.gif

Disabled people couldn't get Insurance or a Mortgage so trying to buy a bungalow was out of the question for many years.

When I look back on those years I cant remember being unhappy. That was the way it was and one just got on with life.

I consider myself very lucky as I've done so much more in this life than I ever dreamed possible. All the art work I've done, working for films and TV; something I wouldn't have done if I was AB. I had 43 years of a very happy marriage, so life's been kind to me.

Its now that I find the most difficult part, living without my soul mate is hard plus the ageing process is taking its toll; so ageing with SCI isn't for wimps.

Despite all of that, I still think I'm very lucky. As a lot of you know, I have wonderful young ladies who take excellent care of me so I try to stay happy. Having said that, I truly believe you can only achieve true happiness if you can share it with someone. If you're isolated through choice or circumstance then you'll not be as happy as someone who has others to share things with.

Use this as an analogy. Its so much nicer laughing with someone than laughing alone.

You ask, "How long before I'm happy again"? The answer lies in your hands, no one else's.

I hope you find the answer your looking for somewhere on this site, but the true answer lies within you.

Good luck.

Mike
PS. Its taken me 2 hours to type this, but I was happy to.
Yasko
QUOTE (Scribbler @ Aug 26 2009, 12:08 PM) *
Well I'm definitely an old timer as I've passed the 50 year mark as a C4/5. Although I agree with virtually everything members have said there's something no one has hit on. But first let me explain something.

Before my injury I'd never seen anyone in a wheelchair. It first hit me that I'd be like this the rest of my life when I was stretchered into a Ward full of SCI guys. The guy next to me couldn't turn his head or move a muscle. the guy opposite told me he'd been injured during the War, which had ended less than 10 years ago.

Because most of the guys were like myself, ex military there was a great camaraderie amongst everyone. Even though you were flat on your back looking at the cracks in the ceiling, everyone encouraged and supported each other. You'd be chatting and joking with someone down the Ward for 3 or 4 months but couldn't see him. There was just as much banter amongst us then as there is in the joking threads here.

When one guy couldn't get to Physio because he'd pooped himself, he told the angry Physio, "Sorry but I had an accident". A wag on the Ward quickly replied, "He did it on purpose", which had everyone laughing, even the Physio and the poor guy.

We set ourselves small goals to achieve, like, who would have a pillow under their head first, and bet small tubes of smarties on each goal. The most bizarre was who would have the least residual in their bladder once the catheter had been removed for 3 hours.

I know these might sound stupid or trivial, but they kept everyone's spirits up, so I didn't see any depression. There may have been the odd tear now and then, but that's only natural. I found my experiences on that Ward have helped me cope with things throughout the last 50 years especially as I'm the last survivor.

The thing that hasn't been mentioned is this: - Society has changed since then. Back in those days, when the Physio told you to be there at 2 pm, you just went. It was quite a long push, which they made you do yourself, but if you came up against an incline a para would help push you up it.

Now a days people have the right to refuse Physio or refuse anything, which a lot do. A Sister I know on an acute SCI Ward told me she sees patients leaving with only 50% of their full potential, so I think the changes in Society haven't equipped some people with the capabilities to deal with their injury as well as they might have.

We all have our bad days, but so do AB people so we all adapt differently and at different speeds.

When I read some of the posts here I feel so sad. People don't realise just how lucky they are to have this Forum plus all the equipment and gadgets that enable SCI people live a better quality of life.

When I was injured there were no computers or Forums like this to gain information or make friends. There were no mobile phones; I couldn't even use an ordinary phone. There were no electric wheelchairs plus access into places was non existent; there certainly wasn't any disabled toilets anywhere; just a handy bush. smile.gif

Disabled people couldn't get Insurance or a Mortgage so trying to buy a bungalow was out of the question for many years.

When I look back on those years I cant remember being unhappy. That was the way it was and one just got on with life.

I consider myself very lucky as I've done so much more in this life than I ever dreamed possible. All the art work I've done, working for films and TV; something I wouldn't have done if I was AB. I had 43 years of a very happy marriage, so life's been kind to me.

Its now that I find the most difficult part, living without my soul mate is hard plus the ageing process is taking its toll; so ageing with SCI isn't for wimps.

Despite all of that, I still think I'm very lucky. As a lot of you know, I have wonderful young ladies who take excellent care of me so I try to stay happy. Having said that, I truly believe you can only achieve true happiness if you can share it with someone. If you're isolated through choice or circumstance then you'll not be as happy as someone who has others to share things with.

Use this as an analogy. Its so much nicer laughing with someone than laughing alone.

You ask, "How long before I'm happy again"? The answer lies in your hands, no one else's.

I hope you find the answer your looking for somewhere on this site, but the true answer lies within you.

Good luck.

Mike
PS. Its taken me 2 hours to type this, but I was happy to.

clap.gif Your text might help awake some people into the reality of life! clap.gif
greybeard
Well done Scribs - and well said. clap.gif

Anyway, how many pencils did you break typing it? biggrin.gif
ohio4282
Scribbler, that was a wonderful post. Thank you so much for that.

I think my boyfriend has a similar outlook. He's shared with me that for 10 years after his accident, most days, he wouldn't bother getting out of bed. He would focus on how much effort it would take just to do that. And if he "bothered" doing that, he would never get very far before going back to bed. And even some days, he wouldn't even bother getting back into bed. He'd stay in his chair and stare at the TV, even sleeping n front of it.

This continued until his mother, whom he was living with at the time, refused to keep taking care of him, when he was still capable of so much. That snapped him out of it. He learned to drive, got a job, and got his own place. At first, it was just doing something productive and over time, he started to look more at the little things in life to be grateful for. Once he got on with life, the happiness, or at least contentment/acceptance, followed.

As long as I've known him, I've never seen him really down. He has his bad days, and I've seen him get very frustrated, but he is good about getting him self out and about before he lets it get him really down.
StillFingers
31 years post for me and still going strong. I had a rather long winded reply to this question, but instead of boring you I'll cut to the case.

There have been ugly, depressing, humiliating moments, sometimes the shitonfan.gif and you just can't help but loose the "keep positive, it'll be okay" attitude. However, in my case there have been many more positive "happy" moments. I've meet some amazing people, AB and disabled, and a few...less than able...along the way. Each with their differing challenges, some succeeding, some failing, some just existing.

Among many things, there is one that has kept me most happy both pre and post SCI, it is action. Being engaged in life, living in the moment, DOing, getting out there...not sitting idle, fearing, thinking/analyzing to much, becoming even more paralyzed.

When I was very young, peanut butter and jelly often ended up on the counter/table, not the bread...I learned to make a sandwich properly after DOing that several times. After my SCI, this simple action was repeated, learned again and I was happy...again. I've continued to take action, I've built complex computer systems and software. I also tend to a garden of fruits, herbs, veggies and flowers.

In another thread Qbounce eluded to the "living now" way of life. Accomplishing, doing everyday activities, small simple actions, this is one key to happiness for me. Once I started taking control of my life, accomplishing things...even little ones...life got better, happier.

Being here, sharing life with all of you, makes me happy also...as do the pictures of Scribbler's PAs wink05.gif

Jerry cool.gif
Scribbler
QUOTE (Yasko @ Aug 26 2009, 09:46 PM) *
clap.gif Your text might help awake some people into the reality of life! clap.gif


Thanks Yasko, but as people are so different, some find it harder to adapt than others. I honestly don't like writing much about myself, but if I can help someone then I'm happy to.

QUOTE (greybeard @ Aug 26 2009, 10:00 PM) *
Well done Scribs - and well said. clap.gif

Anyway, how many pencils did you break typing it? biggrin.gif


I wore out 2 pencils typing that; can I send you the bill greybeard?... mfr_lol.gif

QUOTE (ohio4282 @ Aug 27 2009, 02:48 AM) *
Scribbler, that was a wonderful post. Thank you so much for that.

I think my boyfriend has a similar outlook. He's shared with me that for 10 years after his accident, most days, he wouldn't bother getting out of bed. He would focus on how much effort it would take just to do that. And if he "bothered" doing that, he would never get very far before going back to bed. And even some days, he wouldn't even bother getting back into bed. He'd stay in his chair and stare at the TV, even sleeping n front of it.

This continued until his mother, whom he was living with at the time, refused to keep taking care of him, when he was still capable of so much. That snapped him out of it. He learned to drive, got a job, and got his own place. At first, it was just doing something productive and over time, he started to look more at the little things in life to be grateful for. Once he got on with life, the happiness, or at least contentment/acceptance, followed.

As long as I've known him, I've never seen him really down. He has his bad days, and I've seen him get very frustrated, but he is good about getting him self out and about before he lets it get him really down.


Thanks ohio, and I'm pleased your boyfriend has found contentment/acceptance. These thing all take time plus a bit of encouragement from someone; or even a good shaking.

There are a lot of people on this site I admire. Even though they've only been injured a short while they get on with life and don't shut themselves away. I know they may struggle at times, as I'm sure your boyfriend does, but its natural; we are human and have emotions.

I'm sure your boyfriend feels more independent than he did before, plus he has you to support and encourage him. My best wish to you both ohio.

QUOTE (StillFingers @ Aug 27 2009, 02:53 AM) *
Being here, sharing life with all of you, makes me happy also...as do the pictures of Scribbler's PAs wink05.gif

Jerry cool.gif


Oh you naughty man Jerry; no Pineapple for you today... mfr_lol.gif My PA's like me posting their photos on here; they feel like International Celebs.. smile.gif Eva deliberately posed for the Pineapple shot, so they are really fun girls.

The hardest part is when they leave; its like a piece of me is missing, but there's a little corner in my heart for all of them over the years; I think of them as daughters.. . well, most of the time... wink.gif
greybeard
QUOTE (Scribbler @ Aug 27 2009, 11:25 AM) *
I think of them as daughters.. .


Sure you do! wink05.gif
Scribbler
I've just gone through this whole thread and noticed the original poster hasn't replied. Maybe Simon might have to do his famous Detective work again?

It doesn't bother me about posting information in a thread, as someone else might benefit from others experiences, I just think it strange that the person giving the cry for help hasn't responded. What does The Team Think?... smile.gif

I said daughters Greybeard; I didn't say my daughters.. crazy.gif My beautiful Zdenka is back next Wednesday; I suppose I'll have post a photo just to keep Stillfingers blood pressure from falling too low... smile.gif
StillFingers
QUOTE (Scribbler @ Aug 27 2009, 06:09 AM) *
I've just gone through this whole thread and noticed the original poster hasn't replied. Maybe Simon might have to do his famous Detective work again?

It doesn't bother me about posting information in a thread, as someone else might benefit from others experiences, I just think it strange that the person giving the cry for help hasn't responded. What does The Team Think?... smile.gif

I said daughters Greybeard; I didn't say my daughters.. crazy.gif My beautiful Zdenka is back next Wednesday; I suppose I'll have post a photo just to keep Stillfingers blood pressure from falling too low... smile.gif

Mike, you may indeed have to post a picture of Zdenka, lets say in two weeks or so...I'll be rollin by then, probably passing out along the way out my back door to finally feel a bit of warmth from the sun...so my BP will need a boost and a Pineapple might just help dancegirl.gif
Mcowling
QUOTE (Scribbler @ Aug 27 2009, 02:09 PM) *
I've just gone through this whole thread and noticed the original poster hasn't replied. Maybe Simon might have to do his famous Detective work again?

It doesn't bother me about posting information in a thread, as someone else might benefit from others experiences, I just think it strange that the person giving the cry for help hasn't responded. What does The Team Think?... smile.gif

I said daughters Greybeard; I didn't say my daughters.. crazy.gif My beautiful Zdenka is back next Wednesday; I suppose I'll have post a photo just to keep Stillfingers blood pressure from falling too low... smile.gif
Mcowling
I am so sorry I didn't thank all of you who replied to my original question of how long it would take to be happy again. I've just been in a chaotic state since my husbands accident....ups and downs...you know. Anyway, please forgive me. I have such respect for all of you and your willingness to be open. I should try harder and I will. You are all sweetie pies for helping me get through this. Forgive me? Love to all of you. Mary
Jana09
I'm AB with a new T4 boyfriend. Since I met him my world has expanded.
His accident was 10 years ago so he's had time to adjust and boy has he!
Didn't know him before so nothing to compare to but he works hard in a
very responsible job, looks after his kids, does sports and treats me better
than any man I've ever met. People come to HIM for help and advice.
It's therefore easier for me Mcowling because I've only known him like this.

So interesting to read all the comments here - how people perceive different
levels of injury to their own (the quads vs paras thing!). I get cross now when
friends moan about how hard things are for them, I feel like telling them to
pretend they can't use their arms/legs for a week and sitting in a chair. And
smiling through it. Certainly puts things into perspective....
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