Dreams lost; what has CP done to your's

[Mark N]

I have been trying to come up with another topic that all of us can relate to and need to talk about but it seems no one around us cares about this part of our lives. This can get negative but I hope that it is refreshing to think about life before we had CP change it so much.

The biggest thing I have had to give up is the involvement in my children's lives. I am involved in them but many things I planned on are gone. I thought I would pop over to my daughter's college and take her to lunch or dinner once in a while. I have come closer to my son in some ways but I will never be his football coach the way I had always dreamed of being. I could be a bit more involved with his football but I stay out of the coaching part because he needs to learn to do things the way his team does them even if I don't think it is the best way.

I always thought I could be the strong rock of our family and my wife could count on always having me the rock that she expected to count on. My wife has had to adjust to a much different marriage than she anticipated. It hasn't been easy for her to accept and it would have been easier for me if she could have stepped up as I became more disabled. I know the uncertainty is really hard on her. Our lives have taken away our ability to plan for the future and it makes it hard for our spouses.

My dream of coaching football until in my seventies establishing a connection with the community and the kids that would span the generations is over. I am now being contacted by my last group of players as they move on through high school into college wanting my help with issues they come up against. Soon that part of my life will disappear.

The sad thing for me is that as I continue to get worse there is no new dream to replace what I have lost. I watch my dreams die year after year without new ones to spurn me on. It is fortunate that I can deal with life one day at a time as that is about all I have left.

I don't really mourn the loss of these dreams as much as I think about them and have fond memories of how things had been. I am hoping seeing life one day at a time doesn't take away my fond memories but it feels like I am in a time warp because all those memories were before my disability.

[Kathi49]

Mark,

I was sitting here and thinking if I have lost any dreams. I don't think I have. I believe where there is hope there is always a dream or goal. I do live differently being retired and on a pension and with pain. But I still have hopes for the future. That doesn't mean my days are fun filled...not by a long shot. But there are some good ones. :) I just don't FEEL I have lost the dreams you speak of. If anything, I feel I have done alot in my lifetime and have gained from it. So, I guess you could say I am in a contentment phase even with the pain. Sure, I hate the spinal conditions and the other conditions as well. But I AM grateful that I can take it easy when I need to. So, lost dreams...not really...they are still there...just of a different kind. :)

[curiousforever]

I was going to join the Marines at 18 - dad said it was stupid. So being a daddy's girl - I didn't.

My ex didn't allow me to become a police officer. So we were together from 19 til I was 25.

Met my hubby now at 25, married him at 26. Had the 3 younger boys right in a row - while pregnant with my middle of those 3 the pains in my arm started (nerve pain).

Hubby now would have let me become a cop. I even discussed joining the military during my pain free time - but it was summer and we decided for me to enjoy summer with the boys.

I still want to be a cop. I know it'll never happen. I've wanted to since I was 16....I cry - not too often about it -but that's cause I don't want my famiy to see. My boys tell me they'll be cops 'for you'. I don't want my dreams to dictate theirs. Which is why I try not to think about it when they are home.

Regret is not an easy thing to live with. Even when you know that *IF* you had done what you wanted to - (ie join the Marines) that I wouldn't have my kids - cause I probably wouldn't have met my ex - or my hubby. I certainly don't wish I hadn't met them and not had my boys - but I wish I could have done BOTH.

I don't have any other dreams.

[debhun]

Dreams? Well right now I am working on to be able to go fishing this year. I missed it last year cause of all the pain. There is no way I can do this. I just love to go King fishing. Working in my yard it looks so bad. I have to work at getting better. it is Not going to put me down any more. I will do what I have to to get there. I am so tired of being sick. I have my brain back now the 2 meds had me all messed up. I feel so much better now. I am getting out more. That was a big step in it self. I am on my treadmill in the AM and PM every day now. I don't go on it long right now but I will get there. I think getting off the meds helped out a lot. I am still on my pain meds and they are doing a good job. I just got the patch today and I will see how the work. I got 5 mg. I have never had them before.


Deb

[Jo6]

Yes, I have had to give up many things and that totally depresses me!!

Dreams? Just about all shot to hell. At my age I thought I would be doing a lot of things and that is not counting the "have to get done" things.


I never in my wildest dreams thought I would be grieving just because I can't even sweep the da** floor!!

Retirement, I was looking forward to. Mr Jo only retired this past year. Yes, I robbed the cradle. Even after I had to sell the business I was thinking all would be well after I got rested and changed a few things in my life.
Well, it didn't exactly turn out that way. I did not expect my whole life would be snatched right out from underneath my feet.. Yes, a bunch of very bad falls took care of every things else in my life.

I can not even pick up the wee bundle of joy for fear I would drop them. I'm always glad when they can walk, then we can get to know each other.

I did not plan to sit at home trying to do something productive. Giving up my dreams? I didn't realizehow much of my life would go poof. Mr. Jo may as well go back to work. Of he stays busy doing the things HE always dreamed of. He has built a 24x40 garage and work shop. Yes, I feel cheated. I am glad he Can do these things, but it is forever in on mind.

I have all but stopped driving. I don't feel safe. I do not like to ask him to take me anyplace. I guess that is my pride, may as well get rid of that too! Sorry folks, major whine here. My life plans have all changed. I am thankful to be alive.

I guess the first thing I need to do is stop crying over spilt milk and dream about what I can do the REST of my life. This is where I start feeling horrible about all the grumbling. My MIL has Alzhiemer's Disease and she is wasting away in a NH, not knowing us, but what's worse she doesn't know who She it. Now that makes me very sad.

Guess I better start dreaming again, all new rules I care very much about every one of you and my heart hurts for all the baggage you all have to lug around. Just remember I care. Julia

[Mark N]

Kathi, I too have moved to the point of contentment with my condition but it would be nice to look forward to some things in the future. I can live day to day but it used to be so fun to live for today seeing how it was a building block for tomorrow. It is good you are content, have some good days, and still have hope. It is important to have all those in our lives.

CF, I am sorry that your dreams were missed opportunities. I feel for you and the remorse you have for not going ahead with your dream. Don't worry about your boys they will eventually take their own path. My sone wanted to be just like his dad, go into the Marines, teach and be a football coach. Because I didn't push him into it and I let him know it was fine to follow me or to find something else to do. He is entering high school and now has a different path carved out for himself and I am sure your sons will too.

Deb, I hope you get to go fishing this summer. My son would like to go but his grandmother will have to take him. I hope you continue to do better and your pain meds keep giving you more of your life back this summer.

Julia, it is terrible to lose dreams and it doesn't make it any easier if we lose them as we get older. Like you, each day is a struggle for me so I am happy to live and see another day but can't think about doing anything else. Thank you for being here and helping those of us that need your help. I hope you know how important a role you have here on this forum.

[debhun]

Thanks Mark your son can come any time. My baby has graduation Friday. And he is going to the beach for the week. I don't think he will be fishing.
As of right now I can't do any fishing. I have to get my pain under control. I hope it is soon than later.

Deb

[curiousforever]

I guess I need new dreams. But like what? Them figuring out why this is happening? AND being able to fix it?

It's exhausting to think about the future - cause if everything progresses - how will we know what we will be able to handle?

[Nathan]

Ok, I'll try not to whine.

I was trained in xray and loved it. I had planned a long and fulfilling career helping others in a job I got a lot of enjoyment from. I, like curious forever, wanted to join the Marines. Almost did to. Then right before I signed the papers, both their doctors and mine jumped in and said Absolutely Not!

Ok, time for plan B. I too looked at becoming a police officer-not going to happen. So, I took menial jobs hoping that I would eventually be well enough to do one of those 3 things.

But my health has gotten steadily worse and the prognosis is that the deterioration will continue. All of the jobs I had wanted and dreamed of doing are gone. Work of any kind is gone.

On a more personal level, I have dreamed of getting married, having kids. Raising a family, traveling, playing ball with my children, etc. While I can still get married and have children, it won't be how i thought it would be. I'm in too bad of shape to be very physically active, and traveling would be extremely difficult. So, now I I'm not sure how that would go.

But I don't want to be too much of a downer, so while I've had to give up some dreams, I still have some left. I want to try to help others with health problems, be it volunteering somewhere, or starting support groups, or whatever. Going through what I have, I have gained a lot of empathy, and I have spent alot of time online researching, so I am also a lot more knowledegable on some health issues than I was before. I'm still thinking and looking for a way to put the things I have gained to use. I'm not giving up yet.

So, to sum up what has turned into a rather long post, I guess it comes down to this: while I have had to give up some dreams and plans, I'm not ready to give up. I'll keep trying to adapt.

Sorry this was so long,

Nathan

[ErinENj]

CP has changed everything about my dreams, but more of the execution of them than actually achieving them. The one big one that I thought I was going to lose becaust it was just too hard on me physically was graduating from college, but as we all know, I managed to pull that one off.

Here's what's left on my dreams/life goals/life to do list:
1-Get a good job: Start at a smaller local newspaper, get some experience, and then start working my way up. From the small local, move to a larger state newspaper, like the Star Ledger, and then from there, go national, hopefully to the Washington Post (the only national paper I like. The New York Times, while closer to my neck of the woods, is completely not my style. They are too stuffy, and too controversial, among other things.) My pain will cause 2 problems with this: 1-It'll be hard to do the reporting. Standing on my feet for long periods of time at press conferences and scenes of an accident/fire/crime and things like that is somewhat near impossible for me, but like I did with school, I'll have to make it work. That's the only way really to be able to do my job, no matter where I'm working. I'll have to find little tricks, like taking my meds at the right times or finding some chair I can throw in the back of my car and grab if I need it. Also, with the reporting comes walking, which can be somewhat of an issue. 2- The larger the newspaper, the longer the hours and the less predictable the job becomes. The longer the work hours, the less rest and recovery time I'll get overnight before I have to face work again the next day or over the weekend. Also, I'm going to be on call 24/7. I can't exactly plan around a major news event, they have the tendency to pop up suddenly and unexpectedly. If I'm in a lot of pain, or having difficulty moving, or even had been on my feet most of the previous day tracking down leads, having to do it again the next day or having to pull all nighters is going to give me some serious issues that I'm going to have to find a way to work around. But I refuse to give up on this dream because of the pain. I think it's just a matter of trying to alter the execution of the dream rather than giving it up entirely. This is something I have been thinking about and planning since about a semester before my back started, so it's been a long time trying to figure out ways around. Unfortunately, I won't know if I can find that way anound it until I get into it, so I'm going to have to start it and then figure it out as I go.

2: Getting married and having kids: This one is going to be one of the hardest dreams to make come true. I have no doubts about that, especially since I haven't even had a date in more than 6 years. The hardest part is meeting someone. I'm not out in the bar scene. I have a very limited number of opportunities to meet someone, and non of them are exactly productive ones. Maybe I'll meet someone at or through work, I don't know. I can't even begin to try and figure this one out. I think it's just going to happen when I least expect. The pain is going to affect it the most by limiting my opportunities to meet people my age because I can't go to the places where they congregate. And the having kids piece goes right along with all of that too. If I don't meet someone and get married, then the whole kids thing would seem slightly difficult. But I did hear recently that there is another problem. I heard somewhere that the more spinal issues a person has, the harder it is for doctors to administer an epidural, and there's no way I could handle the pain of childbirth along with the pain of my back.

3- Making sure that my kids and that I never have to worry about money ever. I don't care about being obscenely wealthy. I just want to be able to give my kids what they need without having to not pay a bill or something like that in order to do it. I grew up in that. My mother was horrible with money and I always felt guilty asking her for something I would need for school. I don't want my kids to have to go through that with me. I want to be able to give them what they need without having to come up with some financial miracle. This is going to be made difficult because of the two things above. If I find a husband with a good job who makes a decent amount of money, then fine, but if not, I'm going to have to work for it. And that's gonna be hard with my back problems.

I'm sure there are more, but it's 4am, and I'm tired. Plus, this is getting to be an Erin Special, otherwise known as a novel. There are two big things that I have to remember about my dreams and making them come true is that one, they might take a bit longer than most but as long as I get it done is all that matters. Also, it's gonna hurt. There's no question about that. But I refuse to give up on my dreams. Maybe I'll have to alter them in some ways, but I will not change them completely or give up on them. After all, I always have hope, right?

[BrokenBladder]

Well my body started giving up on me at 35. I was in my prime and ready to

take my business to the next level. I owned an insurance agency and was

doing great. My doctors informed me I had to stop, at least for a while. Yeah

let's just make that forever!! Now I'm on SSD and I can't even keep up with

my own house, much less anything else. My first husband of 21 years couldn't

stay with a woman who couldn't take care of everything so we divorced. I did

remarry, but with a serious chip on my shoulder!!

Now I look at my two boys, ages 16 & 18, who always had a mother that was

larger than life. I can't do the things for them that I want to and that bothers

ME!! I'm always asking for help, which I never used to do, and life seems like

it's just passing me by. I do try to be positive about things, but CP is a

terrible thing to get past. Okay thaat's enough rambling for now but I'm sure

all of you understand where I'm coming from. :eek:

[Mark N]

One thing I knew would happen as people started on this is that there would be a big difference based on our ages and where we are in our CP lives.

Nathan and Erin, I was in the same boat as you early in my CP career but you both have more advanced pain than I had at your age. We all seem to get hit at different times. I just want both of you to know the hope of still doing wonderful things while suffering CP. I married, had two great kids, and my coaching success happened after CP hit. I hope both of you are able to achieve the goals you have in mind. I can tell you that without knowing it, I was in a race with my deteriorating condition. Do all you can and don't pass up opportunities because you have less opportunities at second chances but still have the ability to do wonderful things in your life.

Lisa, It is difficult when you get struck down in your prime. After all the work and the pay-off right in front of you it got ripped away. It is too bad your first husband couldn't live up to his wedding vows and walked away when your disability hit. I hope you are able to find new dreams to follow but I know the disability can take those away.

CF, you have nailed the problem about dreams for those of us that have advanced very far in our disability. It would be great to have dreams but continuing to go downhill and not being to count on the future doesn't leave us with dreams. Is living day to day good enough to keep us going? So far I have done okay with living day to day but I do miss pointing towards a dream and building day by day to achieve the dream.

Thanks to everyone that has answered so far. It has made me more aware of the different stages we are in. It is one thing that makes CP so difficult, we have it for different reasons and we are at different stages of working through our CP life.

[alex44]

Dreams, I remember them. Then the pain monster took them all away. I am very lucky to have my fiancee and a roof over my head but dreams? I wish I knew. I want to work. everyone wants a drug test and most are incometent to administer one - no one wants to know your history as it would be to much work for them (evidently) so i come back positive and lose the offer. several times. i want to dream, will keep on trying but some days just don't know. another thing with wanting to work, anyone notice its all 10-12 hour shifts now? to me this is a way to get rid of us older folk. just makes it harder to get by - I keep telling myself it will get better but i just don't know. Best of luck to all
alex44

[JAVISI]

Mark,
I have posted to you before. I do not have back pain but my pain is chronic due to neuropathies. I have trigeminal Neuralgia, frequent bouts of sciatica, and nerve pain in my stomach. any way enough of that!

I was a Nurse before I became disabled. Home life was bad with an abusive hubby. I threw myself into my work. I loved and knew that I was placed on this earth to care for others! I became sick with Neuro problems in 2003. I stuck it out and stayed, with my co-workers help we would make a large list of the things that I had to do! They were so sweet! Finally my boss told me I needed to go on family medical leave.:( !

I was crushed I got all of my self esteem out of my job and felt so much pride when I worked. I worked in the ICU, so I really got to know my patients and their families well. I was able to do little things that made them feel better. I lost my identity!

I really didn't know what to do to get some sense of who I was. I did get out of the abusive marraige because of my disability. I was no longer able to pay all of the bills any more! That certainly was no loss!;) .

I hurt my kids by the divorce:( , I hate that! When I first got sick my daughter told me that God thought that I had worked so hard that he was giving me a break.

Losing my ability to drive, and my dad being my gareteur of my money I feel like a child having to ask my dad for a ride or money!

I can't take care of my grandkids, one is 3 and the other is 1. Physically they wear me out. That is a big blow. I love them so much and want to spoil them and be the best grandma ever.

I have lost my ability to eat, I get aspiration pneumonia, had a gastrostomy tube but my body rejected it, after suffering from a perforated bowel when it was placed. I then had a nasogastric tube placed. When the time come to put another tube in my stomach. When I get pneumonia again, I will get another one placed. It is hard not to eat food. So I am being careful and waiting of another bout with pneumoinia! I only have about 50% of my lung and diaphragm capasity, and amage to my heart. I may not make it with my next bout of pneumonia but I just want to live as normal of a life for as long as I possibly can!

Sorry this was so long!
Dreaming Big and Reaching for the stars! Javisi;)

[cindybear]

Hold fast to your dreams, for if dreams die..
A brokened winged bird, can not fly.....

That was a poem of my heart...My dream to be a nurse..Since I started collecting those poor little dead creatures on the road and making them a cementary at age 5...I acheived my goal at age 30, worked and loved it up until my aneurysm at age 38..So I did live my dream for awhile and loved those years and will cherish them...

Now, I cheat, I am not suppose to pick up over a gallon of milk for a second..But I have 6 grandchildren all under the age of 4..Priceless they are..2 are recent newborns . 7 and 8 weeks boys..I pick them up and love them all the time..I just worry, if this will be the last day I will pick them up or play with my 4 year old granson or comb my 2 year old grandgirls hair..Will I be able to watch them grow....So I'm holding fast to my dreams...For a flock a birds to fly....Hugs,Cindy

[Mark N]

Alex, I understand how your dreams can die. It is a terrible thing to happen but when you can't count on being able to do the same activity the next day. I think I have swapped dreams for enjoyment, as much as I can find in each day. Sorry that the job market isn't more adaptable to someone like you that could work if hours could be adjusted.

Javisi, your situation is so sad because not only are you dealing with your condition but you were so needed at a career you loved so much and had to give it up. Understand, your kids might have been hurt by the divorce but that doesn't mean you hurt them. Unless your actions did something to hurt them the blame isn't yours. I hope your condition improves as your kids and grandkids need to have you healthy.

Cindy, what a wonderful way to look at holding on to your dreams.

[Kathi49]

That was good Cindybear! I feel as you do. And even though I am not a grandma yet I can still get a hold of my great nephews! And, I love watching the younger ones grow up and I mean the 20 year olds LOL! So, I kind of live through them in a way. They ALWAYS have something going on and keep me entertained constantly...always something doing. And this weekend I will be babysitting my one great nephew who is only 1. I haven't seen him in months...so I am looking forward to that. I miss having a little one around sometimes. And, yes, to watch them ALL fly is great...it is amazing to see and talk with them about all of their different career choices. Anyway, I feel like I have accomplished a lot. So...it is their turn and it is fun to watch them, talk with them, just hang out and help when I can. :)

[jimac]

Hi Mark,

I had (and still have) simple dreams for my life. I went to college, got married and built a life that centers on my wife and home. We never had any children. My dreams for the future are also simple. I hope to retire someday and devote myself even more to my wife. I want to help her enjoy and live her life to the fullest.
I also live day to day trying to make each day just a little better than the one before. Most days are not any better... they just turn out different. With everything considered.... my life has been a good one and my future does not look to bad either... even with CP. I have lived with pain most of my life and I will not let it be a guiding force that determines what I can or can't do. Although, pain is can be a limiting factor. Each day is wonderful in a different way. That is my simple dream.

I hope that this makes some sense as it seems that it is a rambling mess of incoherent thoughts. Maybe it is the meds....lol. Lyrica does tend to make me mellow in the head. :rolleyes:
Jim

[Mark N]

Jim, you aren't rambling enough to blur the sense you are making. I would love to go back to the days of fighting the pain and getting the most out of each day while I was teaching and coaching.

Your wife is very lucky to have a husband like you. I hope you are able to do all the things you want for your wife.

[JAVISI]

Mark and friends,
I do have dreams that I plan to acheive before I die. Some are little and some are big. I start my day6 off with listening to "Dream big" By Ryan Shupe and the Rubberband it is great inspiration to me!

I had my gr4andaughter, the 3 year old for 3 days, We took her fishing, she always went with her dad who is in jail. (that is another story) We had so much fun! watching her catch a fish priceless! I got many pictures and a lot of snuggling!
What a wonderful thing! I ahve always tho9ught that this disorder can take away so many thing buit I will not let it atke away my dreams and memories!

Dreaming Bi and Reaching fopr the Stars, Javisi

[Mark N]

Javisi, it sounds like you and the grandchild had a great day fishing and something like that would give you dreams. It is good to hear that you have dreams and continue to hang on to them.

[jazzmama]

Mark,
An interesting discussion point.

I hit a point about 7 years after the removal of a brain tumor where I had to redefine my dreams. I had lost many things in the physical world due to illness - my house, a baby, my marriage and the list goes on however a pivotal moment for me was when I realized how lucky I was to have all of that to lose in the first place. Only then was truly able to count my blessings for all of the good that remained in my life.

After 14 years of soul searching, pain, frustration and chronic illness, I've learned that I can only change my attitude. It takes a mindful effort to not give up and work on my dreams in spite of the challenges I face - not always easy or at all times possible.

Whether we've have had a major illness or not, aging has a way of changing the bar on our limitations - maybe we (including all who've faced serious/chronic illness) are just made more quickly and acutely aware of our limitations. This awareness of the fragile human condition can be a wake up call to do the best you can with what you have.

I don't dream in the same way I used to but what living adult does? I set goals and go about reaching them as often as I can - sometimes throwing my hat in the ring so I have no other choice but to follow them through. Nothing ventured, nothing gained. I'm relearning how to be MINDFUL in all that I do.

Today, I work in both music and art as often as I'm able and host a weekly show doing what I love to do. I don't expect to be the best parent, artist, or musician on earth but I do make an honest effort to do the best I can with what I have. Life is in no way as easy it at once was for me but as I fight the temptation to look in the rear view mirror to see what I've left behind, I have learned to look ahead to find and truly appreciate new possibilities.

Not sure if that helps - I hope you all keep dreams alive and are able to move on in the best ways you can.

jazzmama
_________________
- minor stroke,
- craniotomy to remove a brain tumor
CURRENT
- Epilepsy
- chronic pain (largely due to severed cranial nerve V)
- PTS though getting much better
- inoperable brain lesion

[Mark N]

zazzmama, sorry your illness cost you so much. You have done a great job of finding the silver lining in your life but it is too bad that you couldn't still have your child and family. You are right that the only control we have is our on attitude about life. It is so good that you are still able to do the thing you love even though it isn't as much as you would have been able to do in the past. I hope you can keep going on as long as you want to and as long as you love doing the show.

[Mark N]

I want to thank all the people that have responded to this post and the ones that will later one.

I have gained an education about you and how you handle life with the limitations our diseases place on us. One thing about this post I was hoping to get is how our dreams change through the different stages of CP/disability. I can see that those that are suffering and still able to work approach each day much in the same way I did. I guess what I am still wondering is when your life has been reduced to one day at a time, we can't plan because we don't know the shape we will be in from hour to hour, do we still have dreams or even need them.

I have accepted living day by day and have even developed a pretty positive attitude about it. I do miss the drive that dreams gave me in the past. It is odd that dreams were so important before but I am able to be happy living with a day to day attitude. Thanks for all the different ideas about life while dealing with CP.

[jane2]

Lately I've been thinking that one of the things that, is rarely discussed with chronic pain, with doctors, is how hard it is to function and how much life is destroyed. I bet nobody here is really functioning very normally and maybe it varies from person to person but, what chronic pain does the daily life is really worse than the pain.

I don't know what my dreams were anymore. I think we were supposed to be making them - me and my husband. It wasn't that I was doing anything so important but it was my life and my jobs in my hobbies and seeing my friends and I can't do anything anymore. My husband is taking care of me and I'm too afraid to dream because I'm afraid that I'm going to get worse.

It doesn't help me to dwell on what I can't do. The best I can do is get through the day and try to make the best of it and appreciate what ever good things there still are. Day-to-day living is a struggle. I just do the best I can and I try not to dwell on what I can't do because it'd just makes me depressed.

[GardeniaGirl]

I haven't been able to post yet on this thread because I still find all my losses overwhelming. Both the things in the past I have already lost due to pain and the future dreams I have given up.

Every single day I get triggered off in one way or another by lost dreams.

I wish I could say I am emotionally on top of my losses but I am not. I feel overwhelmed by them, even though compared to some people, I have a number of good things in my life.

I've wanted to post here on this thread but to even start my list would overwhelm me right now.

[Mark N]

jane2, what you say is so true. After becoming disabled and unable to work I asked my daughter if she were missing out on anything that her friends did with their dads now that I couldn't work. Her reply surprised me 'Dad you have been disabled my whole life'. Since I had been able to teach and coach I hadn't seen myself as disabled even though I couldn't live a normal daily life. All our days were effected by my pain and spinal condition.

As you point out, I don't function and I have been functioning very well with CP. Since being unable to work each day is a struggle that I am lucky to find one 'normal' thing I can do during the day ie fixing dinner is about all I can do, I will have to substitute a different activity for dinner.

GG, it isn't easy to get past our losses but we need to find a way to let them go at some stage of our CP. It seems the further we are with our disability the less we can dream not because we don't want to but because our lives don't give us the security of tomorrow.

[cindybear]

I haven't any real dreams for me except maybe get through a day without a horrible grinding headache, that ends me in the bed....Or waking up to another day alive and well..Which is good for me......It seems like at times , I'm just surviving day to day...But thats o.k....Because what I leave behind to me is what is important right now,,,I'm not no whiney..Why me...This just Happens and I've accepted it..And I want my children and my grandchildren to know Me..Not my desease...So every day , I struggle and get up, and smile..And I'm happy for each day I'm blessed to have...And I make do with what I got...Hugs, Cindy ;) :p

[suede]

I have started to post to this thread many times and myself or something going on around me has stopped me, I hope to keep my thoughts together long enough now to see this post through..

First let me say that all the post here are very enlightening. I would like to comment on each but can't, this is one of the things that indirectly CP has taken from is my ability to concentrate or sit very long, something very upsetting for me.

On to what dreams I feel CP has taken from me, my dreams were all really more on the simple side. Over all the one that bothers me the most was the dream to after a life time of pain from physical abuse and other, I dreamed of being able to live each day to the fullest and do way so many things that life and circumstances stopped me from doing.
Such as enjoying my children, doing my best to work on our relationships, to be the wife to my current husband that I have always wanted to be, and love and play with my grandchildren.
I wanted to go back to school and work in the domestic violence field, there are many more dreams as I had never allowed myself to dream as a child or young adult as each day was about survival. I only had a few years between getting out of DV and finding my daughters again before CP changed our lives.

However I don't believe that it is so much living with CP that has changed my dreams as I believe if it was just the pain I could find ways to live with it (not that I have a choice) but with myself as I'm sure with many of us it is the fear of what the pain means and the unknown.
The pain is only a symptom and a warning to me that at any point my life could take the biggest change yet and that is to become totally immobile and paralyzed.
I know it is a chance that everyone lives with, however I think that the CP keeps these thoughts closer to my mind as it always a constant reminder of what may be.

I want to say though that I believe that no matter what ones life is like or about, dreams change all the time and circumstances change them and every aspect of our lives, so for myself I do my best to get through each day the best I can and keep my dreams small.

I may be getting off topic here, sorry, but for me it is also the medication and the strain of living with CP that effects my thinking and ability to concentrate that stops me from fulfilling what dreams I still have, such as starting a small specialty business and doing the things I always said I would if I had the time, now I have all the time in the world and not the ability.

PLEASE, don't take this post as my always living in a self-pity world here because I don't believe I am, I feel I have so very much to be thankful for and I am, I'm a firm believer that there is a reason for everything, just as there is for this happening to me.
I'd just like to feel that I contributed more to life.

Linda

Sorry this is so long and hope it makes sense.

[Mark N]

Cindy, letting your family get to know you instead of your CP is a wonderful dream to have. At some stage of our CP, acceptance is an important step to live with our pain.

Linda, you don't come across as whining. I really know what you mean by having so much time it is disappointing to be unable to do the things we have dreamed about. Before, it was a lack of time that kept us from doing it and now our physical and mental limitations are what keeps us from doing it. As hard as it has been for you to respond to this post I am glad you were able to put it down in words for us. Although it isn't what I would call a dream I still hope all of us have some miracle in our life that takes our pain away.

[suede]

Thanks for the response Mark,
I guess mine wouldn't seem like dreams, maybe more like goals I don't know though to me it was a dream to be a real family and to go to school to work with others that had been through DV as I haad been.
However we are still a family it just isn't what it may had been if I was able to take a more active part in it, even though my children are grown I feel like I still can't be here for them as I would love to be and wasn't able to when their father kidnapped them and they grew up believeing I didn't want them.
Anyway thanks for reading and caring.
Linda

[Mark N]

Linda, it is good that you still have your family and awful that your husband kidnapped them and had them believe you didn't want them any more. I feel so bad for what you have gone through but glad you have got past it the way you have. I hope that you and the children have a good relationship for a long time from now and in the future.

[jane2]

Mark: I can't work and prolonged time I could do housework and that was really important. I loved cooking but had to give that up early on. Now I can no longer do the housework and I really feel like a loser.

I've stopped defining myself by what I do, which isn't necessarily a good way to define yourself anyway. Most people thought we would grow up to be somebody and maybe you even make your dreams and it didn't end up being what he thought it would, so even healthy people have that problem. You get a certain age and you fine light is and what you thought it would be and it's really a collection of moments with people and that's what counts.

So the little things become more important when day-to-day functioning is a struggle. Time spent with a loved one maybe just watching a movie or talking are taking a drive or whatever you can do, however limited that is, becomes more significant. It's forced me to rethink things. I don't think in terms of big projects just little things, but life is made up of a series of little moments.

[OriAl]

Just being quadriplegic would have been tough enough, but central pain syndrome insured that I'd have no life, and I don't. 26 years now, and still getting worse.

[champgoof]

Mark you do come up with the best topics.. For as long as I remember I was going to be a lawyer, finish high school, take a year off then back to school to get that law degree to defend people or perhaps work as a DA and help clean up our streets. Everything went according to plan ( well sort of lol) until a point, I graduated high school, took a year off got a job, moved in appt, then moved to the city ( 13 hour drive from home) worked during the day and studied at night. even managed to get straight into law. then everything started changing..

the illness took a hold, I stopped studying after I got my first fail in my life. started seeing doc after doc you know the drill. my dream now consistent are being happy with my sweet bf, work for as long as I can and be ready for when I cant anymore.. I would LOVE to be able to have an RV and travel america I save any money that I can thinking at least I will have something to fall back on if we dont make it there. it changed all my dreams and I fear it will change them still.

[Mark N]

jane2, you make a very good point about learning about life and coming to the point that you realize it is about the moments you have with others that counts the most. I have found that is about all I have left but wonder what will happen when I become more isolated with this disease.

Alan, I think you are the same guy I knew back in the days when this board was wild and wooly with no rules and all kinds of fires going on. You have dealt with your disability so long and I wonder what you can do to meet people and have more from life. It is a concern when you become so isolated unless you belong to some church or other group that looks after its own. Thanks for adding your perspective even though there isn't much we can do to help you. I was hoping to get a broad range of levels of disability and you have given us the perspective of someone that is extremely limited in what they can do.

champgoof, you are an example of the way CP takes a hold of our life and brings about changes that we don't want. It is good you still dream about your RV and travel, it would be fun, I hope you save enough and are able to do your traveling.

[Kathi49]

Mark and Jane2,

I think I could have written Jane2's post!

I definitely stopped defining myself by what I "did"...meaning career. But I don't think I ever really defined myself by my job. It was just something I
did to earn a living and I am and was proud of my accomplishments and I did love my job. But that is where I draw the line. As she says, I think when you hit a certain age it just doesn't matter anymore. And as my sister is always saying...when it comes right down to it...family and friends are what matters the most. But I am with Jane2 I had to stop and "rethink" as she says. Also, when contemplating retirement I always remember what my mom said which was..."Jump in! The water's fine!" And it was and is! It is the small things I enjoy now and some of the things I missed while working. Sure, I can't do as much as I used to...but there are some things I still can. Just taking a drive...when my butt doesn't hurt lol, or just playing with the new pup gives me a lot of enjoyment. I know, I know...things that are minor...but the ability to sit back and enjoy it...no matter how small...is what brings me joy.

[Mark N]

Kathi, like you I never saw myself based on my job. I did define my goals based on how well I did my job. The reason I loved coaching football so much was because of the dealings and relationships with my players and their families. It was the worry I had about disability. I wondered how I would replace that part of my life. It has been easier than I thought. My meds and pain take up the time I am not spending with my family.

Jane and Kathi, I am glad you have found the small things to be rewarding because they are really the important things in our lives because small things add up to big things with our families and friends.

[jimac]

Just bumping this thread. It is so good... I think it should be on the first page so everyone can see it and maybe post to it.

Mark, You do have the best thread ideas. :)

Jim