Last post Tue, May 13 2008 7:02 PM by DSB. 74 replies.
This may work for some, not all but it has worked for me and a couple of my buddies. I personally began working with at-risk and gang kids. If you think you have pain, try to whine in front of an 8 year old who's been raped for a few years. My other buddies volunteer a day or two a week at the children's hospital and neither can bring themself to even begin to complain when dealing with terminal and severely injured kids all day. My pain is real and it will probably never go away but every minute I spend with a kid who got a lousy break, my own problems sorta go away. Call your local children's hospital or something similar. They're always looking for help. You have to take the first step. They're not gonna call you.
All I can say is that it works because decency and sympathy for others it stronger than self pity.
I love that you found something, Steve, to put your own suffering into perspective. You are so right, of course, that there are others who have so much to bear that it makes our problems seem a little less significant. Actually, anything that takes my mind off my pain even for a short time is a welome addition to my life right now.
Unfortunately, I am not physically able to go out and volunteer, but I have found something somewhat similar right here on our Disaboom site. I never had anyone to talk to about the endless days of suffering and pain before I found this site and sharing our feelings about it has helped me immensely to feel strong enough to somehow keep going on. As I used to be a Front Line Crisis Worker, this site has helped me learn how to reach out for support and be able to support others, which was a big part of the work I did for 20 years. Learning to ask for support and reach out to others was not something I was good at, but the kind and caring and patient people on here have helped me to find a safe way to do that. Supporting others also helps give me the srength to face another day, so it has its rewards also.
I try to at least keep my mind busy, even though I cannot do much physically right now. I watch shows on tv that keep my interest and help me learn something, not just the reality crap that you could be brain dead and still follow! I also have found other sites online that are supportive of my spiritual needs (not religious), and Hay House Radio has been an interesting offshoot of that. You can keep your mind off the pain for short periods if you find things that challenge your ability to focus and concentrate. In between that and lots of rest, I also do relaxation techniques, which does help with keeping my body a little less tense and my mind more receptive to whatever I can handle doing for the next few hours. And so on and so on. Not a life that I would necesarily envy, but it is better than where I used to be when I was an abuse victim and trying to raise two small children with no clue as to how I was going to do that successfully and very little self esteem with which to do it.
I may be in constant pain, but at 53, I am also finally very comfortable with who I am and the achievements that I have made in years past. I have also learned the art of a lot of patience, both with myself and others, and that has been a gift through these last 3 years of frustration with the medical system and my own body feeling like it had become my enemy. There is a comfort in knowing myself and having gone through unbelievable circumstances in the past and got through them. I have proven that I am a strong woman and I remind myself of that every bad day with the pain and when I am feeling so weak and helpless, or so depressed I can hardly move.
I don't know if any of this will help anyone to understand a bit better how we do get through this chronic pain, but we all do seem to find a way somehow, with the help of God and the Angels. You do not have to be a religious person to develop and have a relationship with God. I came to my understanding of this through the Native Community here in Canada, and how they think of and worship God is how I was able to get through the barriers of my religious upbringing and negative experiences. I talk to God all the time now, in my language, and sometimes we have some pretty heated conversations, I can tell you, and I don't always have nice words to say to him either! LOL But, it is honest and it is who I am and it helps me get out some frustration and anger and tears when I really need to do that. Living alone, you either learn to talk to God or you get a cat! LOL Either way, whatever works for you!
And that is the whole point, to find what works for you. Each of us have a different way of comforting ourselves, and as long as it doesn't hurt anyone else, whatever works for you is fine to do. Some people journal a lot and find that really helps, others need a person to talk to, and still others find strength in their faith. With each day, though, we find something that helps us get through it, and honestly there are times when I don't know how I do..I just know I did get through another one, and that is a victory in itself. I try to find a blessing, no matter how small, in each day and something to give thanks for. It is actually pretty amazing what we have to be thankful for, even in our suffering, and that alone helps to take my mind off my "pity pot" for awhile anyhow.
I do wish everyone a thankful and blessed day tomorrow and a way to find the will to go on. When I don't have it, I come here and mostly listen and sometimes post. It helps me know I'm not alone, that others are right beside me and that they need me as much as I need them. There is something very comforting in that.
Gentle Hugs,
Maggie
Steve:This may work for some, not all but it has worked for me and a couple of my buddies. I personally began working with at-risk and gang kids. If you think you have pain, try to whine in front of an 8 year old who's been raped for a few years. My other buddies volunteer a day or two a week at the children's hospital and neither can bring themself to even begin to complain when dealing with terminal and severely injured kids all day. My pain is real and it will probably never go away but every minute I spend with a kid who got a lousy break, my own problems sorta go away. Call your local children's hospital or something similar. They're always looking for help. You have to take the first step. They're not gonna call you. All I can say is that it works because decency and sympathy for others it stronger than self pity.
Hi Steve - I agree with you 110%. After I'd signed off last night I wondered why I hadn't suggested volunteer work as a way of taking one's mind off their own pain and problems. It's true that there are people who cannot physically handle anything more than what it takes to get through their day. So you're right, Steve - it can't work for all.
But so often I hear people say that they have far too much pain to be able to do volunteer work. I am all too familiar with high levels of pain, and live with it every day, and have for years - pain that is physically restrictive. Like you, I also know the benifits volunteer work has of helping others and helping myself in giving myself periods of time in which my thoughts are directed onto the needs of others and away from my own pain and needs. I've rarely, if ever, had a need for self pity. But when one is pain 24/7 it can really get on top of you and wear you down.
There are so many kinds of volunteer work to choose from that will allow a person to pick something that fits their physical abilities/limitations and time allowances. Nearly all the volunteer work I've done has been conducted from my home, because that's what I have been able to physically handle the best, and it allows me to work on projects pretty much at my own pace (within certain time allowances, of course).
The kind of volunteer work you and your friends are doing is awesome, Steve - kudos to all of you. Even though your pain is still there, reaching out and helping others goes a long way in helping ourselves, and our communities, too.
YES I HAVE TRIED BOTH NEURONTIN AND LYRICA AND AT VERY HIGH DOSES BUT THE ONLY THING THAT THEY BOTH SEEMED TO DO FOR ME IS TO MAKE ME SLEEPY AND THAT DOES NOT DO ME ANY GOOD EITHER . I HAVE MOTLY SEVERE SHARP PAIN IN MY LUMBAR SPINE AND IT EVEN BOTHERS ME TO SIT OR STAND OR LAY DOWN SO ALOT OF TIME I GO WITHOUT ANY PAIN MEDS CAUSE IF THE PAIN IS THERE WITH OR WITHOUT THE MEDS WHY TAKE THE MEDS - MY PROBLEM IS I HAVE AN ALLERGY TO THE MEDS THAT ARE SUPPOSE TO HELP . I ALSO HAVE THE MULSE PAIN FROM MY FIBROMYALGIA BUT I HAVE LEARNED ALOT TO JUST LIVE WITH MY PAIN AND YES I HAVE DONE ALOT OF PRAYING TO GOD TO HELP IN EASING MY PAIN . AT TIMES IT IS VERY HARD WHEN NO MATTER WHAT I DO I CANNOT GET COMFORTABLE. MARY
YES I HAVE TRIED BOTH NEURONTIN AND LYRICA AND AT VERY HIGH DOSES BUT THE ONLY THING THAT THEY BOTH SEEMED TO DO FOR ME IS TO MAKE ME SLEEPY AND THAT DOES NOT DO ME ANY GOOD EITHER . I HAVE MOTLY SEVERE SHARP PAIN IN MY LUMBAR SPINE AND IT EVEN BOTHERS ME TO SIT OR STAND OR LAY DOWN SO ALOT OF TIME I GO WITHOUT ANY PAIN MEDS CAUSE IF THE PAIN IS THERE WITH OR WITHOUT THE MEDS WHY TAKE THE MEDS - MY PROBLEM IS I HAVE AN ALLERGY TO THE MEDS THAT ARE SUPPOSE TO HELP . I ALSO HAVE THE MULSE PAIN FROM MY FIBROMYALGIA BUT I HAVE LEARNED ALOT TO JUST LIVE WITH MY PAIN AND YES I HAVE DONE ALOT OF PRAYING TO GOD TO HELP IN EASING MY PAIN . AT TIMES IT IS VERY HARD WHEN NO MATTER WHAT I DO I CANNOT GET COMFORTABLE.
MARY
Hi Everyone!
I have not tried Neurontin or Lyrica, as I cannot take them due to intolerance of these kinds of drugs, but I saw a Fibromyalgia specialist yesterday who has indicated that he will try whatever he can think of until I find something that relieves the pain. I cannot even put into words how relieved I was to hear someone finally say that! Now I have hope again and that is a gift in itself.
He is starting me on a drug called Pramipexole (0.25mg). It is actually for Parkinson's, but has been used with Fibromyalgia also. It evidently works to stop the extreme pain signals to the brain. I don't even pretend to understand it, but I am willing to try anything at this point. The one side effect that can happen with some people, however, is severe nausea, so if I experience that over the first few days of being on it, I am to call his office and stop the medication immediately, and he will fax another prescription to my pharmacy to try something else.
I finally have found some emotional balance with the Lamotrigine, and now I will finally eventually have some help with the pain, so it seems to be my year for miracles and answered prayers. I really never thought it was going to happen, but I am here to say not to lose hope. There are drs out there who can and will help, you just have to find them. I will let you all know how it goes with this medication so that you can suggest it to your dr if it does work. I hope this letter finds everyone in not too much pain, but you are in my thoughts and prayers if you are.
you sound like me talking i also have fibromalgia degenerative dis disease spinal stenosis i have taken every pain medication you can possible think of to the point where i became addicted to oxycodone and winded in the hospital due to a narcotic withdraw i was tired of always being asleep and not knowing what was going around me i have had 3strokes so that made me realice that i had to do something i guess when you come close to death you learn to see things in a different way i know that counseling had helped my church my beliefs my family and talking about it once in a while because you don't want it to take over you i know the pain is bad there are sleepless nights and like you said good and bad days but just remember that there is a reason we are in this earth and learn to enjoy life i know we have to do it in a different way then others but we can still do it i use my wheelchair most of the times and enjoy the times that i can get outof it i also found a medication that they say it's not suppoce to be so addictive it helps a lot with the anxiety and pain that you have but doesn't put you to sleep or get you high i don't have the name of it with me but if you like email me and i will sent it to you euniceacevez@yahoo.com but most important of all is take one day at a time and just do the best that you can one day you may be able to do more then other days but just enjoy one day at a time including resting and not doing absolutely nothing at all good luck and god bless
Wow! Thanks so much for your replies everyone. I do try and look for blessings in every day, no matter how small, and now I am blessed with a good dr finally...it doesn't get any better than that!
LOL....I sooo wish I was getting some joy out of a Lamborgini.....I don't even own a vehicle and never have....that's ok....I have those days too, Nanal, but it was great for a laugh...God bless you!
Hang in there everyone and with all of our support we will get through this!
Gentle Hugs,Maggie
Thanks so much Nanal for your encouraging words, it is so nice to know that you are enjoying my posts. That was so kind of you to say. I got my warm fuzzies for today, that's for sure!
I also enjoy hearing from everyone and I love the variety that we get on these threads. It is especially heart-warming when we support each other and try to encourage getting through just one more day. It has made such a difference in my life, and has literally saved my sanity.
Thank you all and God Bless!
Hello im a bit low try to be posative i have special needs i walk talk very inteligant but was born with tortus shell kneck got better then i divloeb a lot of neumonies and at 14 i diveloped assmah then much later they discoverd i had romatoid arthrities then i got ill again and they dicded to take an exray and discoverd i have brociecists ive never smoked in my life then i got ill again and they discoverd my ayoto tube is the roing way i have eight operations to remove polyps i had two major operations to remove poplyps in e n t this year last year i do volentry work and go to fantastick day center and church last year two was going blind and a dentisit funny enough said i had a lump in my throwt and i need to go docter emrgancy any way the lump they said was nothing so they sent me to e,n t and low and behold the gorths had come back they book me in to intesnive care they looke after me realy well op was succefull . but i have physio three times a day and a very good family and caerers and docters look after me i also have skin broblems i had exsma from when was young but the last couple of years became pcruises but after my ope my immune sytem droped and i was coverd just missed head so my sister and mum rushed me to hospital
God waches over us my foot was big and the nurse put me on code yello my sister saved my life im still dealing with the skin problem its very imbarrising we have good dermatolagists hear in the uk they put me on uve for a while but not work was elergic then becouse of hart and lungs they have to becarfull of meds they wached me once a week had to get to all my other specialists and then the dm found a medication that suits me its aslo treats cancer
i wanted to ask i get so tired im only 40 i keep feet go dancing onece a fortknight and church evry sunday if it wasn,t for our lord whare would we be i like all your insperational life on hear im glad i found disboom,.
the docters sadi i now have copd never smoked imgaine that any way im sloing down can,t evon go shoping that much now but im gratefull for the care i was wundering how i can get my energy back any advice please kind r margery x
I hardly think anyone dealing with chronic pain is into self pity as a matter of fact pity is not often found here. Pain is clearly a warning sign something is wrong there are two approaches depending upon what can be done one is to medicate and mask the pain the other is to treat the cause of the pain.
Important thing is to understand that no case is going to be the same. My spinal stenosis and old spinal cord injury is different from other health concerns here. I myself do not keep a list of the stuff wrong with me because other then that list I am just fine.
I will never discount any human suffering I’ve seen many of it in the world first hand having traveled far and wide in my life time so frankly the lecture does not hold much weight with me. Knowing my options however are what is important. Many of the subscription pain killers offer side effects often worse then the pain or adduction and even over the counter one can suffer liver damage or other more serious side effects.
So pity for myself I’m sorry your wrong as I go into my forth back surgery in 8 months I go into it fully informed and I have a choice as to what I may do or not do the surgery is to get to the root of the problem will it all go away the pain I highly doubt it. My best shot is to make it get to a level I can function. I find well laughter, family and a large community of friends and artists in the real world and friends here at disaboom a very good support network..
