Do you ever...

[Mark N]

have a few minutes or hours that you feel better and start to think you are improving so that you can consider going back to work soon? I know I am optimistic and see the good while ignoring the bad so that when my pain levels are down I start thinking I could feel like this for longer periods of time and then go back to coaching regulating my good times and bad times. It is foolish because I ignore that the majority of days I am lucky to get ready and get out of the house for 30 minutes. I ignore the bowel problems that plague me every day along with the high pain levels when I am active doing anything.

There is nothing that can be done about this because I prefer to be optimistic even if I get disappointed all the time when it hits me that I am having a false dream. But I am wondering if others talk themselves into feeling better than they actually are.

I have often wondered why I haven't accepted that I will be disabled for the rest of my life because I am comfortable with the idea. Yet I find myself constantly dreaming about getting back into coaching. I know I still have the ability and knowledge it takes but I don't have the physical ability to do it any more and often don't have the mental sharpness needed.

How do you look at your life and how do you deal with it? Are you always overwhelmed and dread the life we have ahead of us or do you accept what has happened and do your best with your limitations or are you optimistic past the point of realism about your condition hoping for something that won't happen? Let me know the approach that you take.

[Dynan]

Mark


After being a chronic pain patient for 11 years, I have found what works best for me is to not look to far into the future...try and find my present life with as much enjoyment as possible...I spent a few years being bitter & asking why me...Most of my close friends are still in the work force...There are days at a time I don't see another human...There are days I dream of a cure for my condition...And when those days appear I have to push them back and keep on trucking...Living alone I have to manage my medical, house, car...Alot of times it gets overwhelming...Had to phone a friend last week to come and replace 3 light bulbs...LOL, I cooked dinner for us and had alot of good conversation...It is unbelievable how many light bulbs blow these days, do ya'll have this problem...

Mark, I really don't know what the answer is and maybe there is no answer...I just try to enjoy each day as it comes and try to keep the hope...

Dynan

[Mark N]

Dynan, I used to have the light bulb problem until I started replacing them with the flurecent bulbs.

Like you, I take one day at a time or my life would overwhelm me thinking about dealing with this much pain for an other 30 years. There is no answer to this, I just wondered what others faced.

[BrokenBladder]

Mark,

I haven't had CP as long as you have so maybe my thoughts are behind yours. I've had CP for 9 years and I have to admit I was angry at first, then depressed, then I accepted it, and sometimes I still get depressed. I want my life to be what it used to be but we both know that just likely won't happen. I spend alot of my time dreaming too........without the dreams I think I would feel so much worse mentally.
Lately I've been thinking about seeing a counselor to help me with the constant thoughts of being disabled and everything it has taken from my life. I'm not taking an AD that has any properties towards helping with depression and I think it may help me to take that.
I think having CP is one of those things that is so difficult to deal with. There is no cure, we can't choose to die in peace, and we constantly medicate for something that will probably never go away.
There is a bright side to CP, we have moments during the day when we feel almost normal and I look so forward to those times.

[tamiloo]

Boy, I’ve been sitting here trying to figure out what to say…that might give any of us hope. Yes, I once in a while wonder if I could go back to work…but then I have to get up and do all I can do to go through my day without accommodating at all for my pain. It only takes a few hours to find the answer.

I’m an optimist as well…but its not easy when you fight pain.

My husband who was diagnosed with MS in 1986 has a best friend with Lou Gehrig’s disease. Something he thinks all day long…thinks because he can’t speak anymore…”It could be worse”…I don’t know how he does it but he does.

I do have times…like tonight…or this morning that the pain keeps me awake, no relief no matter what I do.

I am thankful for finally being granted SSD and long term disability…finally someone believes that I’m in pain…pain a very invisible disease. People say…”But you look so good”, they have no idea. Or when I park in what we call, only out of humor…the pity parking spot…people give me a strange look wondering why I parked there. I park there because I can. Some people have said I wish I could park there…I say I wish I could park where they parked and walk in the store without pain and shop as long as I want without pain. Gets them thinking!!

(((((((Hugs to ya friend)))))))

[BrokenBladder]

Tamiloo,

You bring up another good point about CP. No one can see it and therefore they think it's not real. If I only had a penny for every time someone would look at me like I was crazy for parking in the handicap space.

I'm so thankful for my SSDI as that is the one thing that gets me through this horrible time and I know that someone believes me. What a relief!!

I realize that there are many people who are much worse off than I am. However it's still hard to deal with on a daily basis.

I think this is a good thread as we all have feelings and its good to express them.

[Kathi49]

Mark,

I will just echo what Dynan said. :)

[jane2]

If I'm feeling well the pain doesn't seem very real and I think that maybe I could just walk out the door and go someplace and I know I can't. I don't think much about doing big things like going back to my life as that would get me depressed once I start remembering how I can't do it. But pain is a funny thing, as when it's gone, it's very hard to remember how bad it really was. So I do kind of imagine that I can do a lot more during the day.. may end up having to do more than I really should, because I'm always behind, barely functioning at all that I get flared rather quickly so there goes that fantasy.

The body plays strange tricks on you. It's probably adaptive not to remember pain. If women remembered childbirth they probably wouldn't do it again. You can remember that something was painful, but I don't remember the pain in the visceral sense of really feeling it and therefore it seems sort of unreal. Like it wasn't really so bad, but of course it is so bad.

[Mark N]

Kathi, Lisa, and Tamiloo, thanks for responding. It is interesting to see how others have dealt with their disability. I am glad that I never had to go through the anger and depression of CP because I can see how easy it would be to be angry and depressed.

[suede]

Mark,
I haven't been responding much to post these days, as I have been going through a particular hard time right now, not just with my physical health but mentally.

As you asked, yes there is many days when the pain isn't quite as bad and I think there has to be something I can do, like you I just can't imagine spending the rest of my life being so limited due to pain.

I don't think I have ever really been angry but I have often wondered WHY, I spent the majority of my life being abused to extreme measures and then when I finally got it, that I didn't have to be abused to be loved, I got 10 years of no abuse and daily pain, for that I'm grateful, though it is often hard to not wonder WHY.

I had believed that I had such a high tolerance to pain that I could withstand most anything, then CP hit and I knew that there is nothing compared to living with pain everyday and knowing it will remain that way.

I work at being grateful for what I do have and knowing that it could and may be much worse, I know that there are so many so much worse off then me.

I tried counseling once for CP and the counselor actually believed that I just missed getting beat on and my CP was not real, what a sick joke.

Linda

[cindybear]

never !!! I wish I could have a day that I would feel good, or have no head pain...I can dream...A 7 year head pain will get ya down at times,,,Hugs, Cindy

[Mark N]

jane2, you bring up a good point about how our body makes us forget what we have gone through.

Linda, that counselor needed to have their head examined if it was a serious diagnosis about you imagining your CP because you missed the abuse. It is difficult because CP is invisible in many cases and others can't see the pain we have.

[debhun]

I keep saying as soon as I can I will get back to work. But that day hasn't came back. And after this last week and a half I know there is not way I can right now. But like some of you all I keep the dream. I am putting in for Disability.

Deb

[Mark N]

Deb, good luck with the disability. I hope your dream can happen some day down the road.

I know it is difficult for me to keep hoping that I can get back to coaching as I miss it so much. I know better on an intellectual level but the emotional part of my brain won't let go.