Aa
what keeps you going? -! please tell...
okay - really - we are in continual discomfort at best and generally in pain heII -
please tell - what keeps you going?
bluntly - what stops you from killing yourself?
i would like to know!
i find the pain and fatigue just about unlivable! nearly no quality of life.
not much to look forward to.
most of the time would rather die. sounds dramatic and exaggerated but i trust i'll be understood here..!
what has kept you going?
for me, so far, i guess it has basically been 'just' good enough to 'stay'.
i have just enough belief that god has wisdom that we don't, to just stay on.
i also simply don't have the guts to kill myself. i know people care about me and would be hurt.
as much as i can i am organising my 'matters' just to tidy up as much as possible - which is what everyone should do anyway.
i'm comfy with supplies and finance.
but i'm really kind of marking time and just breathing and taking up space.
what keeps you here? how do you cope?
anything! please share!
please tell - what keeps you going?
bluntly - what stops you from killing yourself?
i would like to know!
i find the pain and fatigue just about unlivable! nearly no quality of life.
not much to look forward to.
most of the time would rather die. sounds dramatic and exaggerated but i trust i'll be understood here..!
what has kept you going?
for me, so far, i guess it has basically been 'just' good enough to 'stay'.
i have just enough belief that god has wisdom that we don't, to just stay on.
i also simply don't have the guts to kill myself. i know people care about me and would be hurt.
as much as i can i am organising my 'matters' just to tidy up as much as possible - which is what everyone should do anyway.
i'm comfy with supplies and finance.
but i'm really kind of marking time and just breathing and taking up space.
what keeps you here? how do you cope?
anything! please share!
I like the quote " you are responsible for the energy you bring into a particular space."
So in a sense you can choose to be negative or positive and I love the way Tuck said you come to a place where you are at peace with where you are in life. It takes years to get there for most of us and a lot of going back and forth between stages of the grieving process. I also used to be very active. I was an athlete and an avid outdoor type person. I used to go rock climbing and mountain biking whenever weather permitted and ran almost everyday. My injuries took all that away at a young age in my 20's. I am now in my mid 30's and am now in the acceptance phase FINALLY. It took so long and took loosing my faith for a couple of good years also. I know now I never really lost my faith or I would not have been so mad at God. How can you be so mad at someone if you do not believe He exists anymore. It takes a lot of soul searching and it continues on a daily basis. You pose a really good question. I still ask that question on bad days and then all I have to do is look at my beautiful daughter that God gave me 5 years ago and those feelings go away and I feel so grateful.
So my friend, we can not really answer that for you. That is one that only you can do for yourself. It takes a lot of soul searching and what you define a meaningful life to be. I know CFS can be horrible and can not imagine living with it. I had a horrible bout with low Potassium for three weeks and it took all the energy away and I could not even lift a brush to brush my hair and spent three weeks on the couch. I could not even take care of my child. I was crying all the time because I became so depressed due to not having any energy to get up to do anything. I told my mom I could not live that way and could not imagine anyone being able to. I can only imagine it must be somewhat like that for you at times. I can so empathize and simpathize with you.
I wish you peace and understanding for those around you.
Audrea
So in a sense you can choose to be negative or positive and I love the way Tuck said you come to a place where you are at peace with where you are in life. It takes years to get there for most of us and a lot of going back and forth between stages of the grieving process. I also used to be very active. I was an athlete and an avid outdoor type person. I used to go rock climbing and mountain biking whenever weather permitted and ran almost everyday. My injuries took all that away at a young age in my 20's. I am now in my mid 30's and am now in the acceptance phase FINALLY. It took so long and took loosing my faith for a couple of good years also. I know now I never really lost my faith or I would not have been so mad at God. How can you be so mad at someone if you do not believe He exists anymore. It takes a lot of soul searching and it continues on a daily basis. You pose a really good question. I still ask that question on bad days and then all I have to do is look at my beautiful daughter that God gave me 5 years ago and those feelings go away and I feel so grateful.
So my friend, we can not really answer that for you. That is one that only you can do for yourself. It takes a lot of soul searching and what you define a meaningful life to be. I know CFS can be horrible and can not imagine living with it. I had a horrible bout with low Potassium for three weeks and it took all the energy away and I could not even lift a brush to brush my hair and spent three weeks on the couch. I could not even take care of my child. I was crying all the time because I became so depressed due to not having any energy to get up to do anything. I told my mom I could not live that way and could not imagine anyone being able to. I can only imagine it must be somewhat like that for you at times. I can so empathize and simpathize with you.
I wish you peace and understanding for those around you.
Audrea
In less than 2000 words this time, I've learned to live in my head. Learning feeds my soul as does the sight of the flowers in my garden or birds at the feeders. I rejoice with music. Yes, it's sometimes work to figure out what makes each of us tick. It's a very individual thing. All the things I use to engage my mind take it off my medical issues and that's a good thing. I refuse to remain consumed with myself, my pain and my problems as I did in the early years. I live in the moment and don't think much beyond the next few days. Of course I have bad days, and sometimes a long stretch of them. I also know there are some good ones to come after the storm so I wait them out. That's what I mean about using your mind to help yourself. If you let your pain and illness define who and what you are, you're doomed to a life that's far less than what it could be.
thanks for the input, some has been helpful, some has not, but i'm glad for the helpful
read on for details!
i can see that for most of us - from well to quite-sick on the spectrum - will go 'DO' something - it's what we're supposed to do, when in good health. i don't know how to explain it except that when confined to bed/ couch/ indoors, 'DOING' is impossible past a point. almost like getting a paralysed person to go do all these things. i hesitate to compare to paralysis because i guess in our mindset, they're different. i described this to my good friend whose brother-in-law is paralysed from chest down; i said it was similar to paralysis though maybe not as bad (who knows) - she said that maybe steve might actually prefer having a chair to whiz around on. digression.
i am on a different page to 'what do you do to distract yourself and to ignore your dire situation?', my question is 'what stops you from killing yourself? why do you continue to live?' (exist, really. not alive and not dead either)
it sounds like i'm in a dark place - probably - it doesn feel like it - i have hardly been more clear in my life. what i know from friends who have been in the dark and made supreme efforts to 'feel' good again is that they have succeeded - TEMPORARILY - they 100% return to a point below satisfactory, CONTINUALLY fighting the pit, never really quite being FREE from it, it always being a point of reference.
it would appear that i am not making an effort to be happy. well whatever maybe. i'm dealing with WHAT IS. er anyway i can't really explain it. it's like finishing a book. i have to learn it thoroughly. to skip over would be like not finishing the book. its like getting a person with a broken leg to go walking, when it is not appropriate for them to do so. never mind. i have asked at the right place. i do appreciate the SHARING - this takes time energy and effort, and we are poor of all these things! - so thank you! we have a lot of overlap - and i guess - this is one of the things that 'keeps me going'...
read on for details!
i can see that for most of us - from well to quite-sick on the spectrum - will go 'DO' something - it's what we're supposed to do, when in good health. i don't know how to explain it except that when confined to bed/ couch/ indoors, 'DOING' is impossible past a point. almost like getting a paralysed person to go do all these things. i hesitate to compare to paralysis because i guess in our mindset, they're different. i described this to my good friend whose brother-in-law is paralysed from chest down; i said it was similar to paralysis though maybe not as bad (who knows) - she said that maybe steve might actually prefer having a chair to whiz around on. digression.
i am on a different page to 'what do you do to distract yourself and to ignore your dire situation?', my question is 'what stops you from killing yourself? why do you continue to live?' (exist, really. not alive and not dead either)
it sounds like i'm in a dark place - probably - it doesn feel like it - i have hardly been more clear in my life. what i know from friends who have been in the dark and made supreme efforts to 'feel' good again is that they have succeeded - TEMPORARILY - they 100% return to a point below satisfactory, CONTINUALLY fighting the pit, never really quite being FREE from it, it always being a point of reference.
it would appear that i am not making an effort to be happy. well whatever maybe. i'm dealing with WHAT IS. er anyway i can't really explain it. it's like finishing a book. i have to learn it thoroughly. to skip over would be like not finishing the book. its like getting a person with a broken leg to go walking, when it is not appropriate for them to do so. never mind. i have asked at the right place. i do appreciate the SHARING - this takes time energy and effort, and we are poor of all these things! - so thank you! we have a lot of overlap - and i guess - this is one of the things that 'keeps me going'...
"esides pharmacy" I turn to meditation on the really bad days when meds won't touch it. It's kind of automatic for me after all these years. If you've never seen a pain psychologist, give it a try for more than a couple sessions. Mine taught me some meditation/ relaxation techniques that at least help enough to sleep though some of the worst episodes.
I used to be a very physically active person. Much as I miss all those activities, I've found I really enjoy things that are more cerebral (if that doesn't sound too uppity!) like genealogy research - research of any kind really. Anything that strikes my fancy I now have the time to learn about it. I've always been a reader and devour books at an ungodly rate. I thank God for my Kindle! Then there's my art and calligraphy that fell by the wayside over the years. It's good to have that back back again. Then there's my music. I never had time to sing with the church choir; now I do that, sing with a small ensemble and ring handbells. There's times I have to drag myself to rehearsal and to church on Sunday but I'm always better for the effort. Learning doesn't stop when you leave the schoolhouse, and as long as I can keep learning about something - anything! - I'm interested enough to stay around.
I've had many bouts of depression over the years thanks to my medical issues, but they're getting fewer and father apart. I thank my pain shrink for that. It really is worthwhile to establish a long-term relationship with a therapist. I guess living with chronic pain means you have to reinvent yourself. I try to see it as an opportunity to indulge in things I had no time for previously. Regret and wishful thinking will only keep you stalled in the dark place you're in right now. As Tuck mentioned, acceptance brings peace. The next step is to figure out what you can do with your "new" life. You have a life, and that life has value. It may not seem like it right at this minute, but it does. Pain patients are no different from anyone else. We all have to find our way through this life and make our own happiness. Nobody else can do it for us. We just have to work at it a little more. :-)
I used to be a very physically active person. Much as I miss all those activities, I've found I really enjoy things that are more cerebral (if that doesn't sound too uppity!) like genealogy research - research of any kind really. Anything that strikes my fancy I now have the time to learn about it. I've always been a reader and devour books at an ungodly rate. I thank God for my Kindle! Then there's my art and calligraphy that fell by the wayside over the years. It's good to have that back back again. Then there's my music. I never had time to sing with the church choir; now I do that, sing with a small ensemble and ring handbells. There's times I have to drag myself to rehearsal and to church on Sunday but I'm always better for the effort. Learning doesn't stop when you leave the schoolhouse, and as long as I can keep learning about something - anything! - I'm interested enough to stay around.
I've had many bouts of depression over the years thanks to my medical issues, but they're getting fewer and father apart. I thank my pain shrink for that. It really is worthwhile to establish a long-term relationship with a therapist. I guess living with chronic pain means you have to reinvent yourself. I try to see it as an opportunity to indulge in things I had no time for previously. Regret and wishful thinking will only keep you stalled in the dark place you're in right now. As Tuck mentioned, acceptance brings peace. The next step is to figure out what you can do with your "new" life. You have a life, and that life has value. It may not seem like it right at this minute, but it does. Pain patients are no different from anyone else. We all have to find our way through this life and make our own happiness. Nobody else can do it for us. We just have to work at it a little more. :-)
Hi Acker,
You've asked a good question. I've been meaning to respond since I saw your post... sorry I am tardy. I don't see you as depressed...I think many of us feel the way you do at times if we have constant chronic pain. Meds can only do so much.
It is my Faith that keeps me going, along with a wonderfully supportive and understanding husband. I also have a dear friend that has chronic pain and we communicate often. A change of scenery this winter did wonders too. New friends, new surrounds! We are moving from this very cold and often cloudy climate to a sunny and warmer state.
In another recent post I talked about acceptance of our lot in life... that has brought me peace. Face it, we've been dealt a crummy hand in life. It's knowing how and when to play the good cards that makes a difference. I get out and enjoy any good day I have or I stay in and do something I love to do.
The journey through chronic pain is not for sissies, it's a tough one. We are often criticized and not taken seriously from relatives to health care professionals. We struggle with loss of our former self and push to maintain some resemblance of our lives BCP, (Before Chronic Pain).
I know you said "besides pharmacy" but I would have no quality of life without the right combination of medications. So it IS part of what keeps me going. Without pain management I would have no life.
I touched briefly on Faith... but it is not "brief" in my life. I trust that God will help me through anything that life throws at me..... and I believe in a better world after this life. One that is waiting for me when this struggle is over....in His time, not mine.
Hobbies help. I have little hobbies that bring me joy and pride... and MedHelp helps!
Peace,
~Tuck
You've asked a good question. I've been meaning to respond since I saw your post... sorry I am tardy. I don't see you as depressed...I think many of us feel the way you do at times if we have constant chronic pain. Meds can only do so much.
It is my Faith that keeps me going, along with a wonderfully supportive and understanding husband. I also have a dear friend that has chronic pain and we communicate often. A change of scenery this winter did wonders too. New friends, new surrounds! We are moving from this very cold and often cloudy climate to a sunny and warmer state.
In another recent post I talked about acceptance of our lot in life... that has brought me peace. Face it, we've been dealt a crummy hand in life. It's knowing how and when to play the good cards that makes a difference. I get out and enjoy any good day I have or I stay in and do something I love to do.
The journey through chronic pain is not for sissies, it's a tough one. We are often criticized and not taken seriously from relatives to health care professionals. We struggle with loss of our former self and push to maintain some resemblance of our lives BCP, (Before Chronic Pain).
I know you said "besides pharmacy" but I would have no quality of life without the right combination of medications. So it IS part of what keeps me going. Without pain management I would have no life.
I touched briefly on Faith... but it is not "brief" in my life. I trust that God will help me through anything that life throws at me..... and I believe in a better world after this life. One that is waiting for me when this struggle is over....in His time, not mine.
Hobbies help. I have little hobbies that bring me joy and pride... and MedHelp helps!
Peace,
~Tuck
thanks for input, and prayers.
mkh9 - briefly - i have cfs which brings with it all-over discomfort and an exhaustion that is painful. i'mmon cortisone which is helpful. i saw a counselor or two - very helpful. i don't think i am depressed. i have been depressed in the past.
i appreciate the suggestions except i am interested more in 'what keeps you going?' rather than what treatments etc, if you know what i mean... because we are all at the stage of being somewhere on the pain scale and getting some measure of relief, and living still with reduced quality of life. so - besides pharmacy - what keeps you going; i'm asking here because for any other answers i would just go see a dr.
mkh9 - briefly - i have cfs which brings with it all-over discomfort and an exhaustion that is painful. i'mmon cortisone which is helpful. i saw a counselor or two - very helpful. i don't think i am depressed. i have been depressed in the past.
i appreciate the suggestions except i am interested more in 'what keeps you going?' rather than what treatments etc, if you know what i mean... because we are all at the stage of being somewhere on the pain scale and getting some measure of relief, and living still with reduced quality of life. so - besides pharmacy - what keeps you going; i'm asking here because for any other answers i would just go see a dr.
Hi Ackerk,
I am so so sorry about your pain. It is really hard to deal with. What is the cause? It would help me to know what to advice you if I know the cause.Or where is your pain? Are you on pain meds? Obviously, you are depressed due to the pain, it generally is a cycle as you have pain you get depressed which causes more pain. I was there and was on pain meds for about a month. I didn't get on anti depressants but did get a counselor. I probably should have though. I do recommend a counselor for you to start in order to deal with the serious emotions that come with this. We of course are here for you. This site helped me and I knew there were people dealing with similar or a lot worse pain than mine. I felt there was some way to vent. If you aren't on pain meds and an anti depressant you may want to try something for a while to get past the pain cycle. You need to hold onto the fact that people do love you and care about you being here. The fact that you said that reminds me of what keeps me here too. So, we have a connection here on this site as we share similar pain problems. You will get better remember that. You just have to find the right combo of drugs until you can either get past this healing process or if it is nerve pain then you can try different drugs like Lyrica or others. Write me back and let me know what has happened to cause such pain. Big hug and I am a friend here that is with you. Hold onto your inner strength.
mkh9
I am so so sorry about your pain. It is really hard to deal with. What is the cause? It would help me to know what to advice you if I know the cause.Or where is your pain? Are you on pain meds? Obviously, you are depressed due to the pain, it generally is a cycle as you have pain you get depressed which causes more pain. I was there and was on pain meds for about a month. I didn't get on anti depressants but did get a counselor. I probably should have though. I do recommend a counselor for you to start in order to deal with the serious emotions that come with this. We of course are here for you. This site helped me and I knew there were people dealing with similar or a lot worse pain than mine. I felt there was some way to vent. If you aren't on pain meds and an anti depressant you may want to try something for a while to get past the pain cycle. You need to hold onto the fact that people do love you and care about you being here. The fact that you said that reminds me of what keeps me here too. So, we have a connection here on this site as we share similar pain problems. You will get better remember that. You just have to find the right combo of drugs until you can either get past this healing process or if it is nerve pain then you can try different drugs like Lyrica or others. Write me back and let me know what has happened to cause such pain. Big hug and I am a friend here that is with you. Hold onto your inner strength.
mkh9
I am so so sorry to hear that you are suffering so badly and that you are so miserable that you can't seem to find any joy in your life.
I personally am a mum of two young beautiful boys, so I struggle through my daily pain to make sure that they are clean, fed, clothed, and loved! I also have a wonderfully supportive husband - I am blessed!
I also find great solace in faith. I have a strong belief in God and in the sacrifice that Jesus has made for us, I don't want to preach at you, but I urge you to reach out - both to your family and friends for support, and also to God and ask him for his strength (some days I don't have any of my own, believe me!) and he will answer your needs.
I hope that you get some relief and some answers soon.....feel free to email me in this website anytime if you want to chat.....
God Bless
Sarsi
I personally am a mum of two young beautiful boys, so I struggle through my daily pain to make sure that they are clean, fed, clothed, and loved! I also have a wonderfully supportive husband - I am blessed!
I also find great solace in faith. I have a strong belief in God and in the sacrifice that Jesus has made for us, I don't want to preach at you, but I urge you to reach out - both to your family and friends for support, and also to God and ask him for his strength (some days I don't have any of my own, believe me!) and he will answer your needs.
I hope that you get some relief and some answers soon.....feel free to email me in this website anytime if you want to chat.....
God Bless
Sarsi
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