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Thread: Here we go, It is long, My PT suggested I really reach out, share and gain support

  1. #1

    Here we go, It is long, My PT suggested I really reach out, share and gain support

    I am two weeks off PT for rest. The past two weeks has placed me in lead-weighted exhaustion. Less function. My PT is so supportive. Long story short, we will reevaluate, and begin again.

    He did suggest a support group. both physical and online. He used to run an amputee support group and said he saw the benefits. He suggested it would be good to be around people who are "in my same boat."

    Partly I am cycling between acceptance? okay-ness and discouragement, weirded out, frustration, depression. you get the idea. Do others cycle through levels of being okay and discouraged?


    *One suggestion to keep a spread sheet of activity etc. and chart energy and function*

    does anybody do this and is it helpful?

    If so, what does your spreadsheet look like?

    This is a more specific question. I edited down a very long venting of depression, and frustration and discouragement to be more specific. I am sorry I wrote it.

    thanks for listening,
    Much love,
    C
    Last edited by cklovesflowers; 07-15-2017 at 12:18 PM. Reason: I would actually like to delete my post. it is too rambling and just too much. I am just discouraged and frustrated and tired. I will edit down
    Non-traumatic SCI. Art, Poetry, and the Great Outdoors; these are my passions. My motto: Paint much love, always ~ Connie

  2. #2
    Hang in there and it is okay to vent here. It is about the only place where you will be understood. Pretty much, you can talk about anything here.

  3. #3
    Senior Member
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    I have to believe everyone who has gone thru, or those of you just starting out, on this journey experiences what you are currently feeling. It's no fun, it's a process and it takes a while. Cut yourself some slack, you have every right to feel all of the above!

  4. #4
    Senior Member Domosoyo's Avatar
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    Hey C-I also wanted to say go ahead and vent here. Please don't be sorry you wrote it.
    Haven't run across anyone using a spreadsheet to chart things. Could be helpful though and maybe someone else here will chime in.

  5. #5
    Senior Member lynnifer's Avatar
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    I'll be 33yrs out at the end of the month - paralyzed from the waist down - and I find I cycle between contentment and depression quite a bit. It's life. Try to separate what is happening to you .. compartmentalization. For example, plan ten minutes to cry and rage ... plan a few hours of getting things done, etc.

    Hang in there. It's certainly not an easy life, but it will make you strong. A sense of humour is essential!
    Make America Sane Again. lol

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  6. #6
    I don't use a spreadsheet but I do keep track of diet/meds/supplements/exercise/energy level/bowel&bladder etc. I used to do it much more intensively and precisely but over time have been able to back off some. I found it very helpful in narrowing things down and sorting out what was helping and what was not, especially because I had good initial recovery, lost a lot of ground and have had some major surgeries just trying to contain the downward slide.

    Best wishes.

  7. #7
    thank you so much for the encouragement and support. I don't know where my reply before this went but hmm. oh well. I am sorry.

    Yes lynnifer, a sense of humor I agree is a must. I learn to giggle at myself and things.

    next month I will start going to a support group that is about an hour away. and I re-joined facebook mainly to join a few groups and then dig in more here.

    It does help even just reading and being able to say, wow, its not just me.

    So thank you. and thanks for giving me the permission to vent. sometimes life just lifes pretty hard.

    much love, C
    Non-traumatic SCI. Art, Poetry, and the Great Outdoors; these are my passions. My motto: Paint much love, always ~ Connie

  8. #8
    Senior Member djrolling's Avatar
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    Sometimes it is hard not to feel bad..... and then feel bad because you felt bad... That was more common early on but then 16 years out I went trough a funk so go figure... I am 25 years out now I have to say life is good...

    Quote Originally Posted by cklovesflowers View Post
    thank you so much for the encouragement and support. I don't know where my reply before this went but hmm. oh well. I am sorry.

    Yes lynnifer, a sense of humor I agree is a must. I learn to giggle at myself and things.

    next month I will start going to a support group that is about an hour away. and I re-joined facebook mainly to join a few groups and then dig in more here.

    It does help even just reading and being able to say, wow, its not just me.

    So thank you. and thanks for giving me the permission to vent. sometimes life just lifes pretty hard.

    much love, C

  9. #9
    exactly. feel bad to feel bad. looking out knowing and believing that life is beautiful. and yet. . . a weird looming icky feeling.

    I am glad to know it is common. Sometimes I feel bad because I think I need to keep positive and look and at all the cool people doing cool things and how they persevere.

    Glad to know that even so, it is a cycle and it is simply okay. It will change.

    much love, C
    Non-traumatic SCI. Art, Poetry, and the Great Outdoors; these are my passions. My motto: Paint much love, always ~ Connie

  10. #10
    Senior Member bigtop1's Avatar
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    I have found that talking to yourself in the third person helps me sort out and eliminate the feelings that need to be corrected. Try this to see if it helps some. A simple " get your ass together and stop feeling bad to yourself" out loud works wonders for me.
    I refuse to tip toe through life, only to arrive safely at death.

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