21 replies to this topic

[Trinity]

I'm fed up!! I thought I was doing quite well but all I seem to be hearing is what I should be able to do with my level of injury (T8). I can't sit out of my chair without supporting myself as my balance is crap, i can't sit up from lying down without pulling myself up with something, I can't transfer from floor to chair. I have no abdominal muscles to speak of and I'm sure this is the problem however friends and family seem to have been doing a lot of 'internet research' recently and they make me feel like i'm not trying to improve. They making me feel like i'm a malingerer!!! I do try, I live independantly (with friends that i lived with pre sci) and i don't often ask for help with anything. I just feel useless!
I guess i'm just having a bad day!
Sorry for the winge
Tx

[nomis]

Time you had an angry roar at anyone who dares tell you what you should be doing.
It's your life and your problem and you have the right to deal with it any way you want.

[Deej]

Hey Trinity, don't be so hard on yourself. There are lots of things I 'should' be able to do also, but can't. I'm T2 and there are loads of quads/tetras out there who seem to function a lot better than me.
Just accept who you are and be the best you can be. Everyone is different and I say ' Vive la difference'.

Take care and I hope tomorrow is a better day for you.

[Kwag_Myers]

Everyone is different, indeed. You here that a lot here, but it's true.

I can understand how you feel. I surprised everyone that I still had the ability to walk. However, I can't walk very much - it's hard, painful work. So, I decided to start using a wheel chair at the office. I feel like it's a set back, but I've tried to do with out it for months now and it's not getting any easier. I've stopped trying to just get by until things get better. This is it. If things do get better, I'll adjust.

I have been blessed with friends and family who don't offer unsolicited medical advice. But if I were in your position, I think I'd suggest having your friends do some research right here in this forum.

[RacingAxe]

Hi Trinity. How long have you been SCI? I remember how much trouble I had sitting without falling down and how it seemed that there would be no way to accomplish the feat without at least some muscles to help stabilize down to the upper legs. It seemed like I had super bearings at my hip joints and the slightest movement would send me right down. After several months, the muscles in my hips and legs started getting tone which helped keep me from moving so freely. I'm a little over a year and a half now and can sit pretty good.
Floor to chair transfers are still pretty tough for me and my level is lower than yours. Don't beat yourself up over what other people think you should be doing. Hang it there!

[Big Valley]

Practice and strength are the answers. Keep at it and build more muscle.

To work on your balance you just need to get your center of gravity and just practice holding it there. If you can, have someone toss a balloon at you for a while that you have to hit back. This will work on your balance while you have to quickly make out of balance movements. At your level you should be doing this without much trouble very quickly. It just takes work then becomes natural like someone standing on a skateboard.

As for the floor to chair transfers that thats strength and technique. The more technique you have the less the strength needed and vice versa. Search Youtube for transfer videos to see some different techniques and just work at a few of them to see what you like best then perfect it.

[E-DOG]

trinity, on Mar 29 2008, 03:59 PM, said:

I'm fed up!! I thought I was doing quite well but all I seem to be hearing is what I should be able to do with my level of injury (T8). I can't sit out of my chair without supporting myself as my balance is crap, i can't sit up from lying down without pulling myself up with something, I can't transfer from floor to chair. "I have no abdominal muscles to speak of and I'm sure this is the problem however friends and family seem to have been doing a lot of 'internet research' recently and they make me feel like i'm not trying to improve." They making me feel like i'm a malingerer!!! I do try, I live independantly (with friends that i lived with pre sci) and i don't often ask for help with anything. I just feel useless!
I guess i'm just having a bad day!
Sorry for the winge
Tx

Trinity,
Tell your "friends and family" to go take an aerial copulation through a rotating pastry. Ain't none of their business what you can and cannot do babe. Do the best you can with what you've got to work with and don't sweat the rest.
People really do piss me off sometimes!
E-dog

[longhaul]

Hi trinity the main thing is that you take care of yourself. It takes more time to do what needs to be done if it's done right explain that to them. I'm T6-7 and I tried to going to college with a full load which is like a full time job, I ended up with P. sores I got sick and didn't eat right or get enough sleep and my back was killing me. I got up at 5 am to get ready for a 8 am class and I didn't get home until 7 pm It wasn't worth it even though I really enjoyed the learning part. After I got out of rehab I played a game with myself everyday or two I would think of something different do do. Where I lived there was a steep hill behind my house there were no trails so I would look for a way to get as far up the hill as I could usually it was 5-10 ft. No one ever saw me doing it and I didn't tell anyone but the higher I got the better the view was and even though I never made it to the top it gave me a sense of accomplishment. Hang in there and try this never fails reply "Hey I don't want to hear about it " See ya.........

Edited by longhaul, 30 March 2008 - 07:40 AM.

[Kwag_Myers]

E-DOG, on Mar 30 2008, 03:11 AM, said:

Tell your "friends and family" to go take an aerial copulation through a rotating pastry. Ain't none of their business what you can and cannot do babe. Do the best you can with what you've got to work with and don't sweat the rest.
People really do piss me off sometimes!
E-dog

I love this guy.

[Tired of hurting]

Hey Girl I hear you are fed up!!!! Guess what your not the only one around here. We all have our bad days. I can relate to what you said about your family. My ex said I didn't try hard enough after 4 weeks. SCI at T 12 . He divorced me because I embarsesed him .My heart goes out to you. I know how much it hurts When you are trying your hardess. You just keeping on doing what you can. Be thankful for what works

[Trinity]

RacingAxe, on Mar 30 2008, 04:45 AM, said:

Hi Trinity. How long have you been SCI? I remember how much trouble I had sitting without falling down and how it seemed that there would be no way to accomplish the feat without at least some muscles to help stabilize down to the upper legs. It seemed like I had super bearings at my hip joints and the slightest movement would send me right down. After several months, the muscles in my hips and legs started getting tone which helped keep me from moving so freely. I'm a little over a year and a half now and can sit pretty good.
Floor to chair transfers are still pretty tough for me and my level is lower than yours. Don't beat yourself up over what other people think you should be doing. Hang it there!

I'm nearly at my one year anniversary, maybe that's what some of the problem is. I know it's not long and i've got plenty of time to improve, when i sit unaided it feels like i'm trying to balance on a big ball! I do practice a lot, I guess i've got to keep going but it is quite demoralising

E-DOG, on Mar 30 2008, 08:11 AM, said:

trinity, on Mar 29 2008, 03:59 PM, said:

I'm fed up!! I thought I was doing quite well but all I seem to be hearing is what I should be able to do with my level of injury (T8). I can't sit out of my chair without supporting myself as my balance is crap, i can't sit up from lying down without pulling myself up with something, I can't transfer from floor to chair. "I have no abdominal muscles to speak of and I'm sure this is the problem however friends and family seem to have been doing a lot of 'internet research' recently and they make me feel like i'm not trying to improve." They making me feel like i'm a malingerer!!! I do try, I live independantly (with friends that i lived with pre sci) and i don't often ask for help with anything. I just feel useless!
I guess i'm just having a bad day!
Sorry for the winge
Tx

Trinity,
Tell your "friends and family" to go take an aerial copulation through a rotating pastry. Ain't none of their business what you can and cannot do babe. Do the best you can with what you've got to work with and don't sweat the rest.
People really do piss me off sometimes!
E-dog

I will have to remember that phrase!!! People piss me off too!

Thanks everyone for the support, I think I feel some roaring coming on, I pity the next "well meaning" person that crosses me, they will feel my wrath!!!
Cheers guys!
Trinity X

[kewlcatkez]

Hi Trinity,

I agree with the others, the well meaning people need to be put straight, and then ignored (when it comes to their advice). I can relate though. I have a connective tissue disorder which means I dislocate many joints, many times a day as well as paralysis (partly caused by it). Some people 'forget' this at times when they are saying what they think I should and should not be doing. My dislocations were every now and then, but after my pregnancies they became a lot worse and are now multiple a day. This too has lead to some confusion with people who knew me before. They find it hard to see how pregnancy has led to my abnormally constructed connective tissue becoming weak and over stretchy and some have even feared that they will catch this from me when they have seen my dislocations!

Others still have completely 'forgotten' about my paralysis and suggest this that and the other to cure my dislocations! and then, in their mind, I will be able to walk ..LOL

So anyway, there are loads of things which I can't do, but then again, even if someone has the same 'ilevel' or lesion, well, no two would be the same. Perhaps you should tell your friends that when they have experienced what you have done and are still experiencing, then they can give you such 'advice'...perhaps..

Take care,

K

[Spud]

Trinity I say be glad you have the mobility that you have. Other people pray to have half the ability you have. I myself can't move anything from the neck down and and have to be suctioned out all the time because I can't even cough. But I'm thankful for what I have , because I know there's people out there that is worse than I am. So try to keep a smile on your face.

[carole338]

Hang in there. I just past my one year and it was traumatic. I look back on the beginning and seem to forget my accomplishments. They are there.

Prayers,
Carole

[Trinity]

Spud, on Apr 1 2008, 02:00 AM, said:

Trinity I say be glad you have the mobility that you have. Other people pray to have half the ability you have. I myself can't move anything from the neck down and and have to be suctioned out all the time because I can't even cough. But I'm thankful for what I have , because I know there's people out there that is worse than I am. So try to keep a smile on your face.

I'm sorry if I sounded ungrateful, I know I was luky to escape with the injuries I did and am acutely aware that there are a lot of people far worse off than me, rehab taught me that lesson very quickly! I just want to be able to do more as would most people on here!!!
T x

[russ1]

trinity, on Mar 31 2008, 02:40 PM, said:

I'm fed up!! I thought I was doing quite well but all I seem to be hearing is what I should be able to do with my level of injury (T8). I can't sit out of my chair without supporting myself as my balance is crap, i can't sit up from lying down without pulling myself up with something, I can't transfer from floor to chair. I have no abdominal muscles to speak of and I'm sure this is the problem however friends and family seem to have been doing a lot of 'internet research' recently and they make me feel like i'm not trying to improve. They making me feel like i'm a malingerer!!! I do try, I live independantly (with friends that i lived with pre sci) and i don't often ask for help with anything. I just feel useless!
I guess i'm just having a bad day

and later ---------------------------------------------------

I'm nearly at my one year anniversary, maybe that's what some of the problem is. I know it's not long and i've got plenty of time to improve, when i sit unaided it feels like i'm trying to balance on a big ball! I do practice a lot, I guess i've got to keep going but it is quite demoralising

Doesn't sound like you're doing too bad at all - at one year I was still having issues with all the stuff you mention, the balance thing comes with practice but what mostly happens is that you just learn to use your arms to suport yourself in a non obvious way that makes it look like you're balancing :-) Having no ab muxcles is a bind but that's not really the problem. It took me 4 years post injury to master the floor to chair (and a complete change of technique). I remember being told that it'd take me 5 years to get to grips with living with SCI and when I think about how much things have improved between me at 1 yr post and now at 5 yrs post they were quite right, it's a huge difference.

You're looking after yourself which is by far the most important thing, the rest will come with time as long as you want it to so please don't feel pressured by well meaning but ultimately misguided others. Keep practising and don't expect it all to happen tomorrow. It sounds to me like you're far from useless if you're living independently and rarely asking for help.

[ParaforGod]

Hi Trinity,
I don't think you sound ungrateful at all. I think we all get fed up with certain things at times.
I am a T4 para and it will be 8yrs. in Aug. and I still have problems with my balance. While sitting
in my chair I use my arms to push if I want to sit up straight. I do alright but if I put my arms above my head I fall forward. I live by myself. I do almost all things for myself. I do have to have some help but not much. Im ok when driving because Im holding on to the steering wheel. Im always moving in my chair just a little to adjust myself because of my balance. Believe me I have worked to strengthen my back and my arms. The doctors tell me I have great upper body strength especially my arms but I just can't sit up as good as I would like.
Although I have alot of upper body strength I still can't get in my chair from the floor. I was told alot of it has to do with my body built. I have the hour glass shape and I was told that makes my arms short. Each person is different. When you know your doing your best don't worry about what others think. I know its hard not to care sometimes. When someone wants to tell me Im not doing all that I can, Im not doing my best I tell them to get in a wheelchair for one week and do everything they have to do from that chair and try not to use any muscles at all while in the chair, even though they couldn't help but use their muscles. Then they can tell me what they think.
Amazing no ones willing to do this.

[Spud]

trinity, on Apr 1 2008, 10:12 AM, said:

Spud, on Apr 1 2008, 02:00 AM, said:

Trinity I say be glad you have the mobility that you have. Other people pray to have half the ability you have. I myself can't move anything from the neck down and and have to be suctioned out all the time because I can't even cough. But I'm thankful for what I have , because I know there's people out there that is worse than I am. So try to keep a smile on your face.

I'm sorry if I sounded ungrateful, I know I was luky to escape with the injuries I did and am acutely aware that there are a lot of people far worse off than me, rehab taught me that lesson very quickly! I just want to be able to do more as would most people on here!!!
T x

I'm sorry if I sounded upset that wasn't my intention. I've been this way for seven years now. The first couple of years were the hardest a lot of depression and anger , but it gets better as time goes by. I couldn't even breath on my own for the first couple of years but now I only use my ventilator to sleep. The doctors told me that that would never happen. I guess they don't know everything. You'll learn to accept yourself the way you are and others should as well. The good news is your injury is fairly new and you will improve. How much varies from person to person, but it sounds like you have lots of potential. Anything is possible.

[silone74]

Hi Trinity i used to fall all over the place to start with i was like a weeble LOL any way what i did was get in the standing frame and start off with letting go with one hand( obviously i was strapped in) to try balance a little i did this for a while and then took both hands off the frame it ended up with me being able to stand in the frame with no holding on and i was able to through a basket ball to another person back and forth with only loosing balance a few times this helped with sitting up in bed 2 but i cant sit up with out first grabbing the side bars on the side of the bed it takes time and when you find a balance point it will click into place and get easier,just take your time do things at your pace after all if you are living on your own and are coping with the day to day living ok thats all that matters it is a big acheivment to be doing that after only 1 year.
Keep strong.



Silone74

[wheeliebear75]

There is a "standard", but it doesn't take into consideration things like how you are feeling. That plays a major part; and it's a lot easier said than done. For me it's not as much the SCI itself as the brain injury for being left alone/taking care of myself and I've got MAJOR disc issues that causes lot of pain.......and even makes things that "should be a cinch for a low para"..........really not all that easy. And by the way even though I'm an L2 incomplete I still feel like I'm sitting on a wobbly chair sitting in bed unsupported. Those lower abs are what people usually use......but they're not working or just not working to normal......and well.......that leads to trouble with balance. We've all got different outcomes and it just makes us more.........um.........unique?

[steveB.O.P]

if you want to take some time out from your family and friends why not try "back-up uk" and see what they have on.

[Old dude]

Hello all just joined first post.
What is normal for others is no longer normal for us. It has taken 29 years to learn to be handicapped ,or whatever the definition of what I am is I had no feeling below the waist for the first five weeks then some sensation returned then some movement at six months I hobbled out of the hospital with kafo's and fore arm crutches if I don't move folks don't know I have a problem. I use a cane most times now and I don't run marathons (never did) catastrophic change is not easy to deal with early on but laying in my bed at night listening the sounds from the head trauma ward began to make me grateful. I have overcome a lot of things in those years, dealing with a leg bag,bowel program, cheeze whiz syndrome, rude noises& acompanying odors,(those I blame on the nearest little old lady with blue hair) What I know today is this life is what you make of it. along the way you will bitch and moan some but that doesen't change a damn thing Take up your burden and move on Willing or not you will have to make adjustments. Hang in there there are not a whole of options Joseph