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Thread: Can't deal with the hurt and upset anymore

  1. #11
    Quote Originally Posted by jime View Post
    As far as your bowels go – I was having a similar experience but it was taking even longer. I opted for colostomy and it very much improved my quality of life. It isn't for everyone but it is something to consider. Good luck!
    "...it very much improved my quality of life."

    I have considered this but said no. It doesn't appear that it would improve my quality of life even though my bowel program is the worst part of my day. It takes up my mornings, so life, it really isn't much of a life at all as the pain holds me back, doesn't even begin until around 10:30 am.

    Hang in Taymas.

    Hang in is all we can do, and do our best.
    Gary Is = L-1 Para for 34 years.....................
    ~~~~~~~~~~

  2. #12
    Senior Member alan's Avatar
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    I'm beyond the end of my rope, and wish I was hanging off it. Tired of having no life, no knowledge of ADLs, dependence, inability to exercise, and the cause of all that, the indescribable, unbelievable, ever worsening pains, and sticking and pinching (whenever I move my arms) shoulder blades. Tired of all these years of having no balance and feeling crooked in the chair, tired of my multi-twisted spine. Tired of my ongoing deterioration, symptoms of an ascending syrinx without having an ascending syrinx, and ongoing scar formation in my spinal cord. Tired of depression. Etc., etc. Bah. I'm ready to be reincarnated.

    The word "tired" can be replaced with "sick."
    Last edited by alan; 05-23-2015 at 06:09 PM.
    Alan

    Proofread carefully to see if you any words out.

  3. #13
    Senior Member
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    Quote Originally Posted by taymas View Post
    I just want to vent if I may, please.

    Everyday same old shit, wakeup in agony, wait for the pills to kick in, finger my ass for 2 hours over the toilet, hot shower that I can only feel on my head, face, arms and shoulders.

    Half the day gone, more pills.

    Lethargic and exhaustion from pills, stare blankly and do meaningless tasks for a few hours, before I'm in pain and waiting to take more pills, which make me sick.

    Then back to bed reflecting on how tomorrow will be different - every night thinking I'll do tomorrow differently, try to indulge in some hobby, go out, exercise, integrate with lost friends and family. Every night.

    Next morning, same old bullshit.

    I can probably deal with the physical pain sometimes, but the mental and emotional exhaustion make me want to scream. I do little tasks everyday to keep myself busy. Try learning my guitar or something alike that I loved to do.

    Everyday I'm just waiting for things to get better - I'm not talking about walking, I'm past that. But just to have everything organised in my room, throw out old stuff, eBay it, just do something productive that puts me in a better position to fucking move on with the rest of the world, go back to studying at school, get back to my old job.

    But on top of this is the looming fear and danger of further neurological decline to my arms due to this cyst/syringomyelia, to which isn't even sorted despite having another operation.

    I have an appointment regarding this cyst tomorrow, I've had an MRI and tomorrow is the moment of truth. Either the shunt procedure has drained it, or I'm shafted and need another surgery.

    I don't know why I'm posting this here - probably because every councellor/support worker I've spoken to keep recycling the same clich?d bullshit around the room like dungle beatles, that I had a euphoric moment last night to perhaps speak to you guys at CareCure, and I know there are lovely people here and can share some tips or philosophical views that make this thing that little bit easier - or just straight up tell me to suck it up

    My love goes out to all you guys, I'm sorry if this is meaningless or inappropriate.

    Regards
    Wow I could of wrote this 7 years ago. I was a T4 complete ended up with one cyst operation at exactly 6 months after original break then another 6 months after that I had another cyst. The second cyst they also put a shunt in as well (we think it worked and is working). But unfortunately on the second cyst my left side went to T1 but i am very fortunate as i didn't lose any mobility or strength in my hand or arm but gained some lovely nerve pain on my forearm and have pain as if i karate chopped the table corner! I have been very lucky in life as i have always been a go getter, very motivated and extremely optimistic/positive.
    Soon as I got home i worked on dropping as many pills as i could and experimented with some combinations ect. I got rid of all the pain pills as they just made me sick and they didn't stop the nerve pain. After 7 years i am now down to 1/3 the pills and in the last 7 months i have even went completely off of Lyrica as I don't like to be even a little bit tired or slow doesn't work for me or my personality.
    The fortunate part is I was able to go back to work after a year and a half recovering. I tell anyone staying busy is the best pain killer on the planet. With my job I am usually doing 20 things at once which is great because it takes my mind completely off the pain. Eventually over time you start to get used to the new baseline of pain (different for all).
    Also when it comes to bowel routine I am sure we all hate the waste of time but if I had to be there anyway i might as well do something i Like, I love to read so i always have my Economist Magazine or business magazines to help pass the time.
    I know its not easy but with time it does get better especially if you are able to find new hobbies or try new things.

    Hang in there buddy there is always better days ahead you just have to fight your way through it and make sure you are always aware of your paralysis level at all times. If you notice any changes at all get a MRI done as soon as you can as time is your enemy, I learned that the hard way. I agree with Donno on the old life, you need to get out there now and join different groups or organizations so that you can meet new people and try new things as some of the bigger centres have programs where you can try all the different accessible sports ect. But keep trying until you find something you enjoy doing. Good luck

    Mooner

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