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Old 10-11-2008, 06:37 AM   #1
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It's depressing

I understand that everyone feels totally miserable but I am completely amazed at how the concept of having a positive attitude rarely comes up. I'll admit that sometimes it is hard to read some of the posts and I can absolutely identify with many. But, has anyone ever considered chronic pain therapy to help yourself come to an understanding about your condition and to be more positive in dealing with it? I know that is easier said than done and I myself spent the first two years of my diagnosis wanting to die and wanting more and more pain medications. Since then I have learned that this is for life (so far that we know of) so what difference does it make if I develop a dependence to meds? I learned that I need to take what makes me feel better and accept that nothing less than a coma will make me pain free. I take an amount of meds I needs to function (including narcotics) and a proactive role in my life. You would be amazed at what a healthy diet, exercise ( ha ha, I know), knowing my abilities and limitations and a positive attitude can do.
It is not my intention to belittle or minimize anyone's condition and lifestyle at all and I sincerely apologize if I do. Really. This only an observation and question.

 
Old 10-11-2008, 09:29 PM   #2
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Re: It's depressing

Kathy great obsevation and I for one do not feel belittled. On the contrary there are many of us who have been preaching a positive attitude for a long time. One of our favorite expressions on the board seems to be 'attitude is everything'.

I have said many times that I am the eternal optimist. Sometimes my friends get aggravated with me because I always say look on the bright side....giggle! Believe me we have had many a thread about the benefits of diet and about the benefits of exercise. And oh, yes they work....when we can stick to them....not always easy but trying is what counts.

Thank you for bringing this all to the forefront again. It is always great to have a reminder to think positive.

Glojer

 
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Old 10-12-2008, 08:27 AM   #3
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Thumbs up Re: It's depressing

I have a positive attitude - I'm positive this DD has ruined my life and continues to ruin lives everyday. I have fought the battle for 17 years (before fibromyalgia was an "in" disease.) I have come the complete circle - from having a highly successful career to being barely able to leave my bedroom, let alone my house.

I am positive I have been truly blessed with my family. They all support me and try to do things to make my life better. God has been good to me when I look at everything and try to find some balance in my life.

I'm not sure where I will end up with this DD. I do know that I want to try to educate the public and doctors on what we really go through and what we need to survive.

When I read the boards and speak to fellow fibromites, I know that living with a disease that totally controls my life and the lives of so many others is not acceptable.

We need to stay as focused and as strong as we can to fight this fight together. We need to continually fight with the medical community to have them accept that we know our bodies better than anyone. We need to fight for the right to have input into our treatments and to be given pain medication that will help fight the pain. I'm tired of the medical community refusing to give us the needed pain medication because we might become dependent or addicted. They are only trying to cover their own as---s.

I ask all of you to try to stay positive, but don't become complacent. Fight for all of us to get what we need to feel better and don't let "NO" be an acceptable response from those with the power to help.

God bless all of you.

7xGrammy

 
Old 10-13-2008, 06:49 AM   #4
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Re: It's depressing

We do need more information available not only to the medical community but also to the regular world as well. There are still so many people out there who have no idea what fibromyalgia is and I truly believe that knowledge is power.
Hannahtom, you nailed it - complacency is a rampant disease in itsself. It is so easy to just "go with the flow" whether it is good or bad. We fibromites need to take control and start getting tougher about educating people. Fibromyalgia ia a very real disorder and new research is out there to prove it. We are making some headway but not enough yet.
Glojer, I have read your positive posts and I thank you for them.
I work with a gentleman who's favorite saying is "it could be worse" and challenges you to come up with an answer. Sometimes what you come up with actually makes whatever is going on feel silly and changes your perspective immediately. Try it sometime.

 
Old 10-21-2008, 05:11 PM   #5
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Re: It's depressing

Kathy,
you are right on the money. I had 2 spinal fusions which left me disabled and with a lots of pain 24/7. I also have MS and severe case of Rheumotoid Arthrities. I am only 53. My first surgery was 2,5 years ago.
Before all this I was vibrant business woman who worked on Wall Street, managed big money and a big office. Loved my job and loved my life.

After my DRs evaluated me as disabled for life, i had a very tough time excepting changes: I felt very bad to loose my job, my independence (since surgery I will never be able to drive, my foot drops, I don't feel my feet at all), for my family and friends to see me this way (cane, walker, wheel chair) and to ask for help. I always was there for everybody and now I need help???

Well, what I never done is a pitty party. I never felt bad about myself. My attitude is " someone else has worse than me, some little kids get sick, they die, I can't feel sorry for myself".
I bought nice books written by people who went through big healthy issues in their lives and left disabled in pain and how they manage day by day. It's not that I did not know myself how to handle, but to read books like this helps you to build inner strenght and understand CP, understand that life is not over no matter what.
I bought a lots of meditation tapes: they are the best! I do my yoga (not what i used to do before my problems, but whatever i can achieve) and meditaion every single day, because I strongly believe in mind-body healing. Without clearing your mind, without understanding that life is still so beautiful and we still have so much to leave for - you can't heal.
Wake up in the morning and be happy that you able to see a blue sky, sunshine, your hubby and your kids and I am talking about feeling this happines and pray every day that you are still here and you can enjoy!

My friends come often and take me for lunch, to walk on boardwalk, to just walk in a park. They push my wheel chair on a days I can't walk. I accepted it, i don't fight this anymore. I realized that not many people in this world leave their lives with no problems, most of us have a lots of them. Due my son's issues I was every 3 month at Sloan cancer instute in NYC for check ups and I saw little babies, teens who suppose to be in school - all on chemo therapy IV attached to their pail arms... And after that I can't understand how can I feel sorry for myself seeing this tragedy?
Instead I pray every day to God and thank him for whatever he gave me. I am blessed with family and friends, with my ability to love people and life, with being thankful to whatever life gives me.

I used to excersice so much (4-5 days a week: cardio, weights, run 4 miles every day) even after 2 knees surgeries. But now I am glad I can walk and when I do - I walk and look at the trees, bugs, flowers and enjoy every moment of it. I try not to concentrate on my problems, try to think as positive as I can and it helps tremendously.
I am also on a lots of meds every day: PK, chemo therapy for RA, steroids for MS, heart medication and so on. Thank God we have available for us in this country, many people all over the world can't get medical help at all.

Mind will heal with positive thinking; even if we never be able to leave without pain, people are stronger than they think. We are. And also we adjust to anything. 3 years ago if someone tell me that i would be able to leave with this level of pain I wouldn't believe it. Now I leave and find much joy in my life still. You just have to keep your mind, your heart and eyes open. Nobody does anything for us, we and only we can help ourselves.

I wish you all to feel better! Don't you ever give up on yourself! Do whatever it takes to feel better NO MATTER WHAT, this all in your hands.

Love and blessings,
Moldova

 
Old 10-21-2008, 08:39 PM   #6
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Re: It's depressing

I went through my own version of a pity party just like everyone else....Why me? Why this? How could this be? Can I get through this? What would my family do without me?

Like many others, I suffer from chronic pain every day, all day. I used to be able to do so much; now I there's little I can do. While my body is fading, I still feel like my mind has a lot to give. One of the things that I have come to realize is how therapeutic message boards can be. For me, it provides a bit of an "escape" from the daily struggles. Primarily, it makes me feel good to help and support others....A way to "give back" so to speak.

We all have to adjust and cope as best we can, given our own situation(s). I am grateful for what I do have and what I have left. So many have so much less. While I admit that some days are much tougher than others, I try to stay strong not only for myself, but for my family. I have a lot of fight left, and will keep fighting. Given my background and medical experiences, I feel that if I can just help support just one other person per day, then I have positively contributed in some way, despite my own problem(s). What I'm trying to say is that we should all try to find a way to contribute to some positive cause regardless of our own issues....It will make you feel better! While I have been stricken with my illnesses for a reason, I've also been given my experiences for a reason, and to keep it all bottled up serves no purpose, IMO. The one thing I can do now is share and support.

There are many in this world who just don't "get it".....And never will, no matter how much you try to explain & etc. All they see is everyone lumped together under the same circumstances, without the ability to differentiate. In addition, some have little to no compassion for the limitations some people have, but unfortunately, that's the world we live in today. I would never wish bad things on anyone, but it does hurt a lot when some just don't understand a particular limitation & etc.....They call it a "disability" for a reason. But again, some just don't "get it."

I am very thankful for those who do, and although there are many negatives for which to complain about, the positives are what I strive and live for. I can't make my problems go away, so I try to make the best out of it. I am determined not to make a bad situation worse.

Regards,

Ex

 
Old 10-22-2008, 06:00 AM   #7
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Re: It's depressing

That is the chronic pain chronicles in a nut shell. Once I accepted the fact that I will ALWAYS have pain from the arthritis, or the DDD or the Fibro or ALL of the above, I learned to do whatever I have to do to live. I still work, fortunately it is a desk job so I can get up and stretch if needed but nothing too strenous. My family knows I have my limitations and are helpful. I do not worry that my body will CRAVE my narcotics instead I accept that I NEED them to live and function. I have found a LOT of compasssion and understanding on this board and I am thankful

 
Old 10-23-2008, 12:36 AM   #8
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Re: It's depressing

Quote:
Originally Posted by Executor View Post
I went through my own version of a pity party just like everyone else....Why me? Why this? How could this be? Can I get through this? What would my family do without me?

There are many in this world who just don't "get it".....And never will, no matter how much you try to explain & etc. All they see is everyone lumped together under the same circumstances, without the ability to differentiate. In addition, some have little to no compassion for the limitations some people have, but unfortunately, that's the world we live in today. I would never wish bad things on anyone, but it does hurt a lot when some just don't understand a particular limitation & etc.....They call it a "disability" for a reason. But again, some just don't "get it."
I think I had the same pity party. You are right that some people will never get it. My mother is one of them. She called me a drug addict the other day. It came up because she wanted me to watch a Dr. Phil show. I told her I could not stand him. She kept harping on it. So finally I said that I did not have a problem with pills. She said I did. She said I am going to different doctors for pain meds. I take too much. Stuff like that. Sad thing is she has no clue. I told her that I only get meds from one doctor. He had sent me to pain management. When I went there, only pain management gave me the pain meds. Then my ortho Dr. said to stop pain management because it would start to cause more harm. He told me to see him and he would treat me for chronic pain. So I did. I even wrote pain management a letter telling them that I would not be back and would no longer contact them for pain meds. I did everything right. I noticed that she no longer asks me how I feel. When I do complain of pain she totally changes the subject. I do take alot of meds. I take amphetamines for Narcolepsy that the Neurologist prescribes. I take meds for my bladder that the Urologist prescribes. None are pain meds. It's not my fault that doctors don't treat you for everything. They send you to specialist for every ailment. All the doctors know what I take. I know she meant well because she is concerned. But I am sure there was a better way of going aroud it. At least ask me for the facts and what pain I have. Then if she had something to say it would be correct. But you are right, no matter what I do, I will never change her mind. You can see it bothers me because I go on and on about it. With all the commercials about prescription drug abuse, It gives us a bad rap I think.

Well, the pain......... I kind of knew it was here forever but did not expected it to get worse.

 
Old 10-23-2008, 07:52 AM   #9
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Re: It's depressing

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Originally Posted by hessie28 View Post
You are right that some people will never get it. My mother is one of them. She called me a drug addict the other day. It came up because she wanted me to watch a Dr. Phil show. I told her I could not stand him. She kept harping on it. So finally I said that I did not have a problem with pills. She said I did. She said I am going to different doctors for pain meds. I take too much. Stuff like that. Sad thing is she has no clue.
We've had this discussion like this before here, but quite frankly, this is why I don't tell anyone about the extent of my condition. Primarily, I don't want people to worry needlessly....They can't do anything about it as nature has set it's course....I don't want to cause those I love any more hardship than what's already in their daily lives.

But also, people judge, and make assumptions. I have just found it much easier if they don't know all the way around. No explaining to do, don't have to talk about it if I don't want to, and etc.

Over time, I'd tell your mother that things have changed and your not taking many meds anymore....That will solve your problem. Also, I worry about people telling other people about one's meds & etc....Then, they tell someone and so on....Next thing you know, someone is after your meds. Again, another reason why I tell no one.

I don't mean to scare you, but all you need is your mother to tell one person that she's concerned about you taking meds, and then your confidentiality is in the hands of this other person that you did not elect to tell in the first place. Typically, once private information (in general) gets to a 3rd person downstream, you can't control what happens from there. This person has no incentive to protect your confidentiality, and quite often, they won't.

It's a very tough subject all the way around, and I feel for you. To think that you're getting all this pressure from those closest to you is very tough.

Take care,

Ex

 
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