I think it would be a good idea if we get a thread going for our newer SCI members
We all know and can remember how daunting it is to discover that your world has changed..... but what got you through and what advice can we give to those going through similar??
We actually have a comprehensive new Spinal Cord Injured package here at Inspired that guides you through initial injury and then what to expect as you get further along the SCI road.....Take a read!
I guess for me the best advice I can give is what I always try to put into practice myself.....
Take each day as it comes...to be honest I just think about the day that's ahead of me because it's enough to think about sometimes.
Yesterday can't come back..whats done is done and tomorrow hasn't come yet..so that just leaves today.
Also be informed...pick your consultants brains...they have a world of knowledge and they sometimes forget that they need to share it with us. I can remember when i was in my unit on the walk round patients would be told they were going to start taking this or that drug and many wouldn't question.
This is your body and you need to be part of the decision process of what is happening so never be afraid to ask and make sure you are given the time you need.
Lastly (for now lol)....you are still the same person...physical function has changed but you are fundamentally who you were before..make the most of the function you have left and work it!....and keep a sense of humor because you are sure going to need it.
One of the delights of my level and syndrome is that we get blessed with many rectal examinations.....such a joy is life at the moment when you look at the assigned nurse to see she looks in fact a tad under 25 stone with fingers like cumberland sausages (ok a slight exxageration but you get my point!)
Post by kilg0retr0ut on Jul 23, 2013 4:56:17 GMT -8
I too have become way to familar with that area myself lara. lol My tip is do not sit in a zero gravity recliner with an indwelling catheter. I believe it was the reason for my first uti.
L4/5 CES
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kilg0retr0ut good point about the catheter and the UTI......
I remember after my surgery my catheter tube ended up around the over the bed table, during the night time a nurse came in a and moved my table whilst he took my sats...he almost pulled my catheter out...
Write a daily diary because its very easy to forget or not notice how much progress you are making.
Nerve regeneration happens at a very slow pace so sometimes you don't even notice the improvements that are happening until you look back sometimes and realise that you can now do something that you couldn't do say a year ago!
Lαrα that's a great idea and I kinda wish I did that myself. I've progressed so much in the past two years and it'd be nice to see exactly how and when I progressed!
Post by freewheeler on Sept 8, 2013 7:19:30 GMT -8
My advice is to listen to your own body, it will tell you much more about what is going on than any doctor can tell you. I remember when i started with spasms in my left leg i tried to see what the pattern was with them and i found that i was having spasms everytime that my bladder was getting full. How clever is that! though the spasms arent funny
Post by kilg0retr0ut on Apr 11, 2014 8:45:58 GMT -8
I was moving from the house to the garage, about 50ft. I was in a hurry, and just at that moment my momentum turned into a sorta run. So convinced I could do better, I tried running a couple of times. Not far or fast,but close. I forgot to factor in the meds covering the pain. This morning I could hardly put any weight on either ankle, both hurt a bit. But I was close
I was moving from the house to the garage, about 50ft. I was in a hurry, and just at that moment my momentum turned into a sorta run. So convinced I could do better, I tried running a couple of times. Not far or fast,but close. I forgot to factor in the meds covering the pain. This morning I could hardly put any weight on either ankle, both hurt a bit. But I was close
Oh damn....be careful kilg0retr0ut....your a liability! Its very frustrating when your brain does one thing but your body does another
Post by offroaderswife on Apr 11, 2014 10:30:30 GMT -8
My advice is to keep your head high, look people in the eye, roll with confidence and find teachable moments for those who are uncomfortable with your disability. It's easy to get offended at what seems like stupid questions but approaching them respectfully and gracefully is the best way to represent our "group" and to teach others how to be comfortable with us. People typically treat us with pitty or awkward silence because they don't know our capabilities. Don't shy away from moments to show the world how productive we are and that it's ok to ask questions and interact with us. If someone won't make eye contact with me or pretends I'm not there then I go straight for them and engage them in conversation. They are usually taken back by my assertiveness but they leave the interaction with a new perspective on the "little disabled girl". I do it every single week at the grocery store. It is my goal before I even go in the store. Be proud and SIT TALL in your chair in public.
My advice is to keep your head high, look people in the eye, roll with confidence and find teachable moments for those who are uncomfortable with your disability. It's easy to get offended at what seems like stupid questions but approaching them respectfully and gracefully is the best way to represent our "group" and to teach others how to be comfortable with us. People typically treat us with pitty or awkward silence because they don't know our capabilities. Don't shy away from moments to show the world how productive we are and that it's ok to ask questions and interact with us. If someone won't make eye contact with me or pretends I'm not there then I go straight for them and engage them in conversation. They are usually taken back by my assertiveness but they leave the interaction with a new perspective on the "little disabled girl". I do it every single week at the grocery store. It is my goal before I even go in the store. Be proud and SIT TALL in your chair in public.
I absolutely agree with all of this offroaderswife! If i go to town in my chair...i want to be a positive role model for others...i care how i look..always make eye contact and smile and am confident.
Sit tall indeed and as a female i like always like to feel every bit feminine and sexy...chair or no chair!
kilg0retr0ut good point about the catheter and the UTI......
I remember after my surgery my catheter tube ended up around the over the bed table, during the night time a nurse came in a and moved my table whilst he took my sats...he almost pulled my catheter out...
Ouch ouch ouch that is my worst nightmare, thankfully it hasn't yet happened.