Hi I just wanted to share my 2 year annivasary of my last day of walking in to hospital after being told in one day op one day home next day !! 3, days I can handle that .. 8 months in hospital 5 ops later no walking, severe spasms everyday .and in worse situation than before op ..yep lifes a b**** then you die ... Only now am I trying to get my head around it as ive been in a black hole when I woke up in recovery after the first op and the surgeon looked at me and said yep all gone well !!# I looked at him and said why cant I feel anything from chest down ... As you can imagine I went into shock back i n surgery 6 hours later after nearly dying !## The rest is just a spiral down of more damage .... So today here I am pulling the dregs of the black sludge that had engulfed me since that day.. I can smile ,and belly laugh with tears at funny things , I can see a light at the end of the tunnel .. ((Not the light at the end of the tunnel you apparently see when ur dying lol lol)) Life has started to feel brighter ,only in the last couple of months did I m a manage to come out of it ,how ??ive.no idea I just woke up put tv on and saw something funny and for first time in 2,years actually laughed my head of and was suddenly back to ME ..who is calm ,laughs at the stupidest thing ..and loves life ..spent years working with disabled adults encouraging them to be independent and showing them the tools how to do it .. So I just want to say to anyone reading this and in a very dark place ,you can get out of it I know it seems like you cant and maybe today you feel lonely ,focus on where you want to be ,pull the positives and create a new life for yourself , feel free to message me even if its simple hi im a new friend ..today I woke up and feel grateful.for being able to wake up and having the opportunity to have this day, trust me my life is far from perfect and still very early day.days trying to suss out what job prospects I can do ,how to pay the bills , the pain is horrendous ,the spasms are HELL.. BUT im sat smiling wrighting this because IM HERE ABLE TO DO IT AND TRYING TO MAKE THE BEST OF ME I CAN .. Thank you xx
Post by kilg0retr0ut on Dec 10, 2016 6:39:58 GMT -8
The first time I seen Anniversary I had just joined my first SCI website. I was just trying to fit in, so I wished them a Happy Anniversary , just thinking it was a marriage anniversary. Then after reading more following replies I realized my mistake and felt like a complete turd. Mimm, I'm so glad you made it out of the dark, some don't. Attitude is big when your faced something like this, and you have a good one.
Congratulations on finding your way back to the appreciation of life. I always acknowledge my SCI anniversary as a marker of survival. We all view the day differently. Some choose not to acknowledge it at all. However you choose to deal with the day, I hope you make it meaningful. At my age any day I wake up is a gift.
so good to hear, I'm in a pretty dark place right now and reading your post made me feel much better and shed a tear. glad your seeing the bright side of life. love the song I attached.
so good to hear, I'm in a pretty dark place right now and reading your post made me feel much better and shed a tear. glad your seeing the bright side of life. love the song I attached.
Kilg ,anniem ,houston Thank you so much , Yes I celebrated by putting xmas music on and putting my tree up ,and covering everything in bright tinsel ,((just short of a santa sat in corner of grotto lol lol)) love it ,like i said first year to enjoy my xmas (last one I enjoyed was in 2013 )) so have decided that every year will put tree up on that date .. I know some people dont come out of dark places ,,I too had a toe over the line of no return at one momment , But refuse to go.there dont fancy sleeping that long yet !! And there are days that are tough but you have to pull yourself forward , And laugh ..like I did to your song shouston lol lol great song ((I know some might find it distasteful, but no direspect ment ,)) So thank you all x
Hi Mimm mimm, I've just joined from the Apparalyzed site (hello to all you other orphans ) and thought it might be encouraging for you to know that my husband Peter had a similar experience following an op for decompression due to stenosis and some old rugby injuries. His lasting problems from a "successful" operation are not as severe as yours sound - but I understand all you say about the experience. Spasticity was (and still is to a lesser extent) his biggest problem. On a positive note - the first two years showed minimal improvements but once they started at around the two year mark still continue even after 4.5 years. It's tough but with hope, determination and the help of some awesome physios he keeps moving forward. Do you get much NHS imput? We found that we had to fight for any help except more drugs - almost every hospital visit was concluded by the offer of stronger or better drugs. Not always the answer and sometimes detrimental. he still takes what he needs but as little as he can get away with.
So glad to hear that you are coming out of the darkness.
Hi Mimm mimm, I've just joined from the Apparalyzed site (hello to all you other orphans ) and thought it might be encouraging for you to know that my husband Peter had a similar experience following an op for decompression due to stenosis and some old rugby injuries. His lasting problems from a "successful" operation are not as severe as yours sound - but I understand all you say about the experience. Spasticity was (and still is to a lesser extent) his biggest problem. On a positive note - the first two years showed minimal improvements but once they started at around the two year mark still continue even after 4.5 years. It's tough but with hope, determination and the help of some awesome physios he keeps moving forward. Do you get much NHS imput? We found that we had to fight for any help except more drugs - almost every hospital visit was concluded by the offer of stronger or better drugs. Not always the answer and sometimes detrimental. he still takes what he needs but as little as he can get away with.
So glad to hear that you are coming out of the darkness.
Hi moco No trying to get help is like trying.to get blood out of a stone , so useless .. Sorry to read that.he had similar problems my surgeon after second op passed me to someone else and then tried to avoid me like the plague when coming on to ward , Total arse #### ...makes me mad but there you go .. Im on baclofen and slowly coming off it , Like your husband when you walk in and dont walk out it is certainly a shock to the system ,after I came out of rehab I basically sat at home curtains shut ,could not motivate ,didnt want to talk to anyone felt destroyed was awful.. But yes thankfully coming away from it , Curtains are all open lol house is all clean and tidy ,my home looks like it did before only diffrence takes me 5 times longer to do it but getting quicker lol How is his spastisty now x
Post by kilg0retr0ut on Dec 11, 2016 6:48:26 GMT -8
My first attempt at housework was unloading the dish washer, took me 45 mins. and I was exhausted when finished. It will get easier once you figure out different ways of doing things.
Hi Mimm mimm , I've just joined from the Apparalyzed site (hello to all you other orphans ) and thought it might be encouraging for you to know that my husband Peter had a similar experience following an op for decompression due to stenosis and some old rugby injuries. His lasting problems from a "successful" operation are not as severe as yours sound - but I understand all you say about the experience. Spasticity was (and still is to a lesser extent) his biggest problem. On a positive note - the first two years showed minimal improvements but once they started at around the two year mark still continue even after 4.5 years. It's tough but with hope, determination and the help of some awesome physios he keeps moving forward. Do you get much NHS imput? We found that we had to fight for any help except more drugs - almost every hospital visit was concluded by the offer of stronger or better drugs. Not always the answer and sometimes detrimental. he still takes what he needs but as little as he can get away with.
So glad to hear that you are coming out of the darkness.
Hi moco No trying to get help is like trying.to get blood out of a stone , so useless .. Sorry to read that.he had similar problems my surgeon after second op passed me to someone else and then tried to avoid me like the plague when coming on to ward , Total arse #### ...makes me mad but there you go .. Im on baclofen and slowly coming off it , Like your husband when you walk in and dont walk out it is certainly a shock to the system ,after I came out of rehab I basically sat at home curtains shut ,could not motivate ,didnt want to talk to anyone felt destroyed was awful.. But yes thankfully coming away from it , Curtains are all open lol house is all clean and tidy ,my home looks like it did before only diffrence takes me 5 times longer to do it but getting quicker lol How is his spastisty now x
Hi - Mimm. Peter's spasticity is much better than it was and mainly is now in the form of very tight muscles mostly in his left hip and leg region. If he overdoes it the "proper" spasms can come back, especially at night. Daily stretching exercises help. he has cut doen his baclofen from 80mg daily to 40mg daily. This actually helped his spasticity as baclofen makes the muscles weak at the same time as damping down the spasms. We think that as his muscles got stronger (result of exercise and less baclofen) he was better able to manage his muscles himself. We did it over a very long period (just under a year I think) only cutting out 5mg at a time. We had hoped that he might be able to drop even further but so far he still needs the 40 mg daily or he gets very tight and is not able to manage as much movement. It's a fine balance but we believe that too much baclofen can hinder rather than help - of course the docs don't tell you this! Have you had any NHS physio? Do you have someone who can help with some passive stretching? Again, I am really happy to hear that you are feeling more positive.
I agree moco, baclofen did the same for me so have stopped taking it and went back to dantrolene for muscle spasticity. the bad side of dantrolene is its bad for your liver, so take low doses as possible, I take 100 mg 3x day.
Hey mimm, that's quite a lot you've been through but I'm happy to see that you're trying to make the best outta the situation! That's exactly what I've been trying to do and it really has helped.
Hey mimm, that's quite a lot you've been through but I'm happy to see that you're trying to make the best outta the situation! That's exactly what I've been trying to do and it really has helped.
Hi DJ Im trying to do the best I can your memory has a cruel way of throwing a pre wheelchair picture in ur head every now and again ,so I just grip on tight and try and focus forward .. If I didnt suffer with the severe spastisity on top as well life would be a lot easier but there you go .. Its not been a quick process or easy to get here and I take each day as it comes , Ive learnt not to try and build rome in a day then punish my self when I dont get anywhere near the building the foundation lol... So I praise myself on each task I achieve.. I do my food ahoppibg online , I also break everything up in a week that I regularly need to do so I spread it daily so I dont have to much each day to do ,and I now manage to achieve doing everything and if I have a bad pain day I take it easy and read and realize its ok to do that ,im not a failure .. :-) so im learning a new way of life with a new attitude ..xx
Hey mimm, don't worry, I'm nearly 6 years post injury and I still think of the past and my able bodied self but that's normal. Just keep your head up and stay positive and work hard towards recovery and things will get better!
Oops - meant to send this as personal message. Note to self - do not tangle with the internet before your 2nd cup of coffee. Sorry folks. **tiptoes out quietly**