do you feel trapped in your body?

[Mark N]

I have gotten the urge again to just be rid of the pain and get back to the career that I love. I know, and my family can easily see, that there is no way short of a miracle that I could go back to work again but I know I still have the knowledge and ability to do it. Do you still feel like you have the ability to do your job but your body is failing you?

I thought I would get to the point that my body would determine what I can do and accept it but I still have the ability locked in me to do a great job if I wasn't betrayed by my body. It is worse that some times I actually feel good for a few minutes and think that if I could feel like this most of the time I could go back to work. I know I can't because when it gets like that too much something happens to remind me that my body can't do it any more. It is really frustrating to really want to return to work and not be able to do it no matter how much I want to. Especially someone like me that always believed that mind over matter was the way to get things done. It seems like I have lost the ability to overcome obstacles like I used to but it is the pain that limits me.

[BrokenBladder]

Mark,

Let me count the ways that I feel betrayed by my body.:rolleyes: Like you I feel like mentally I could get the job done, but then my body speaks up and says, "are you crazy?"

It's like I have this brain that worked wonders for me for years and now my mind keeps going but my body has stopped.

I often think that if I could just get better then I could go back to work and there are days that my body even feels like it will cooperate. Those are the worst days.

The next day my mind is still going but my body won't move. It's times like those that make me the saddest.

When I do feel good and I do something more than I should then I pay for it dearly and my body won't work for several days.

I really do understand what you're saying Mark but I have no solutions. Mind over matter is a good way to live except in our situation where we can't control our bodies.

I have literlly worn myself out thinking about this over the years and nothing has changed except that they have found more things wrong with me and I can do even less now than when this whole mess started.

[Mark N]

The difficult thing about living like this Lisa is our pain and meds conspire against us. I have thought that if for some reason I lost the use of my legs but wasn't in pain I could still be coaching and doing what I love. Same thing for some other body part that I could lose and still coach. It isn't that I want to lose any body parts it is just there are disabilities that could allow us to still use the knowledge and abilities we have but pain and meds limit our concentration, our punctuality, and our reliability to do our jobs. For years I could overcome the pain still function but now I just can't overcome it any more and it is hard for others to understand what it is like for us. Just as I saw my PCP overcome MS for years there came a time he couldn't do it any more. His brain hasn't stopped being the brain of an MD yet his body doesn't allow him to practice medicine any more. It is such a shame when the best of us [he was regularly rated as one of the top PCPs in Indy] is taken away by our disability.

[BrokenBladder]

Mark you're right about that. I had never though of the fact that I could still work if I had no legs as long as there was no pain and no pain meds.

It's very sad to think of all of us who have the brains and desire, but can no longer manage it physically.

[JAVISI]

Mark and Lisa,
Retrayal is a great word to describe how I feel. My body has a mind of it's own. In many ways I have no control over what my body does. As a Nurse, I loved my job! The fast pace, the inense moments when you realy have to think on your feet. I crave this but yet my body has betrayed me in so many ways.

My heart aches to go back to work and yet my mind and body could never do it! I got such great satisfaction from my job. It gave me a sense of belomging. It gave me a sense of belonging and self esteem. Now I often wonder.. Who am I and what in this life am I supposed to do. I long to help others but yet, I will admit I can't even take care of myself!

So the word betrayal is the word that describes it. It has taken so much away from me. My self esteem being the biggest one. I was born to be a Nurse and care for others. I have to accept that I will never work again and that is hard!

I try to keep a positive attitude and yet after 3 years I still long to go back to work and help others!

Good subject Mark!
Dreaming Big and Reaching for the Stars! Javi:)

[Mark N]

Javi, yes it is hard to give up especially when it is a job we seem to be born to do. Your point about not really being able to care for yourself hits home but I know your problems are further along than mine are right now. I can understand how much it hurts you to not be able to do the nursing you care so much about and the impact it has on your 'being'.

A saving grace Javi is knowing that you have people that love and care for you so you still have a purpose in life. It isn't always something you do as much as who you are. Think of what you are allowing those people to do because you let them show how they love you. It helps them grow as people and to find compassion within themselves because you don't shun them but instead let them love you.

[Kathi49]

Mark,

I will try to stay clear of the retirement aspect because I like it! :) But to answer you about ability...

That's a tough one and I would have to say no...and based on everything that is wrong along with medications. Which is basically why I retired anyway. Software Engineering is extremely fast paced and if I went back today, I would have to play catch up. I just couldn't go back to it and really wouldn't want to. I feel it would just make all the issues I have much worse. As a matter of fact, I know it would by sitting in front of a PC all day. And for those three years that I was trying to push past it I KNEW my mind or brain was in a fog let alone having the pain.

Basically, I do NOT feel betrayed or trapped. If I felt I could still do a job, I would still be there. So, in a strange sort of way I actually feel set free of all those kinds of stresses even though the health issues continue. But I can also say I wasn't forced out due to health issues...I OPTED out. So, I think that makes a big difference in the way I feel about it all.

[Mark N]

Kathi, yep I knew there were some people that don't feel this way and someone in your job and situation it probably just seems like early retirement. I know part of my problem is I planned on coaching until my 70s and I continue to think about strategy situations in football. It would probably be better once my son is out of football whatever level he stops playing. Right now he is planning on only playing until he is through high school but he is good enough that he could pay for his education by playing in college but he can pay for it with academics if he keeps his butt in gear. I know I had gotten over it but when he started high school it has made me want to coach his team so it will pass in a few years.

I just wish you could enjoy your early retirement more without all the pain.

[Kathi49]

Thanks Mark!

And don't get me wrong...I can and do enjoy myself but in much smaller ways. I DO wish I could go somewhere more often. And funny, my mom and I were talking about this yesterday. My whole family teases me because I refuse to drive a lot...if driving far. But I explained sometimes it is because I feel lightheaded or dizzy OR just from the pain alone. And sometimes I don't have that at all. It all just depends...you know how that goes. I think my mom just feels bad because she wants me to go and do as I used to. And maybe I just feel better being right in my own comfort zone. Well, maybe not better but at least I have the things I may need around me.

And I DO understand what you are saying particularly if you planned on coaching up into your later years. And I can also see how your son's playing football would cause you to yearn to coach again. So, I DO get it. :) But when I do have lunch with old work group (gals) and I hear of all the issues with BRAC, etc., I secretly sit there and think...thank God I am away from that mess LOL! I had one of them tell me she was so burnt out she didn't know what she was going to do and she is one of the best at what she does...just burnt out and she has years to go. Anyway, sorry bout that. I think a LOT depends on what TYPE of job you had. Going back to testing, project management or any form of IT work would just finish my neck off! :eek: And come to think of it...there has been more than one person in the IT department that has had fusions of both the neck and the back! Two that I know of are still working; three had to retire...myself being one. One developed Arachnoiditis (took disability retirement) and the last one had to have a 3 level cervical fusion (also took disability retirement) and then there was me...having to have another one but took the Early Out when offered to the IT business line. And as I have said before, I just had to draw the line somewhere...and that was the end of the line for me.

But I also know when you are not ready to retire it is a different feeling. Plenty of retired annuitants have gone back as contractors because they tried the retirement thing, didn't like it, and simply wanted to keep working. Anyway, there are several reasons why they went back. I think for the guys and I haven't heard of any women going back, they just simply missed working. But they didn't have CP either!

[Kira]

YES I feel trapped in my body... feel betrayed by my body... all of those things you guys are saying in this post really ring true today.

[Mark N]

Kira, I thought you would be one of the ones that would feel this way too. Especially since you are young and haven't had a chance to fulfill your dream. As much as I feel trapped I am thankful that I could have a lot of success early in many career and get to do things many coaches never get to do. I really feel for those of you that are just starting out because I can picture being where I am now when I was just 20 and all the things I would have missed out on that I have been able to do. I still know though that I am missing out on things I really dreamed about doing because I am so limited now with what I can do.

Kira, I wish there were a way for you to delay disability until your forties like I have been able to do but I know there isn't anything I can do but sympathize with you.

[debhun]

Well I am going though this now. I thought I could paint and clean rugs etc.. I know I can in my mine. But for doing so I am out of whack. My pain is bad. I just have to come to terms with myself I just am not that person I use to be 20 years ago. I love to paint and redo furniture. I can't work a job I loved to do.I keep telling myself I will when I get better. But so far that day has not come for me yet. Yes I know it will never come. But I hold on to that dream. This past week told my body NO you can't so give it up. But it is hard to give it up. So As I sit here it is a hard thing to think I will not be able to do any of the things I love to do any more. There is so many of us that had dreams and can't do them for our CP it really sucks.



Deb*beach1

[Mark N]

Deb, you are right, we don't want to lose our dreams but CP will keep us from achieving what we would like to do. I am thankful for the few things I can do but there are many things that are lost to me and you. Cp sucks the dreams away from us and that is the problem, it kills our dreams and we don't have anything else to replace them with.

[GardeniaGirl]

This topic perfectly captures how I feel.

My health started going bad when I was 27 years old.

11 years later, since I have managed to find and keep a flexible position in my field and still stay in my chosen career (which I love and is a true passion), it is all too apparent to me how the only thing that has held me back from most of my dreams is my health.

I've watched just about every co-worker go on to buy homes, have babies, get married, become supervisors, get better paying positions, get more training, go on international vacations, run marathons, etc.

So, I have observed my peers passing me by for almost a decade.

And the only reason is the disease I have.

So, yes, I do feel trapped. Very much so.

[Debbie71]

Hi, I am new here, so I don't know if I am posting this correctly. I am a 36 year old female who is in chronic pain daily. I have had a discectomy with fusion at L5-S1 about 3 years ago. I did get better for a short time but now have developed more problems. I have DJD, fibromyalgia, HTN and now more back pain that feels like the same type of pain prior to my surgery. I have been working at the same job for 5 years and don't know how much more I can go. MY job is probably in jeopardy now. I have visited 2 Rhuematologist in the last 3 months. Nobody believes how bad I hurt. All I have heard is just excercise and you will feel better. That is what I did and I couldn't get out of the bed today for work. I am at my wits end! I can't even walk around the grocery store without being in pain. Any suggestions?

[Kira]

If everything had gone how it was "supposed" to go, I would be in my final year of a pediatrics residency right now. This coming June, I would either be done with my training and start practicing as a full-fledged doctor or I would be starting a fellowship in a peds sub-specialty (maybe Infectious Disease?).

But then I started getting sick during medical school--the kind of sick that I couldn't ignore or deny any longer--so medical school took an extra year. If everything from that point on had gone how it was "supposed" to go, I would be in my second year of a three-year pediatrics residency. I would have seen my classmates pass me by, but only for that one year, and I would probably be able to explain it away as "yeah, well, I was sick" and move on.

But then I kept getting sick during that extra year of medical school, and it became clear that I couldn't do a residency until my body was a lot stronger. We still didn't know what was wrong, but there was still hope that it would stabilize (or maybe even improve). There was still hope that if I just took a little time and worked on getting healthy, that I could do it. So, I decided to delay residency and go to grad school. That bought me time. It let me defer payments on my med school loans. And, because it was relevant to being a doctor, I could still apply for residencies afterwards without having to explain too much. Plus, I was genuinely interested in public health, so why not go to school for my MPH when I needed a way to defer doing a residency? By now my classmates from med school have all passed me by and are well into their residencies (some will be done this spring). But at least I still hadn't completely given in to the exhaustion and given up on my dream... at least all that I put in to med school wasn't wasted, because I still fully intended to become a doctor... I just needed a little break first, right?

But then, during grad school, my disease has progressed and I've been in the hospital way too much and I'm finding it hard to do even the completely sedentary work of my very flexible job. Now they have a name for my disease and it is NOT something that can get better, it is NOT something that will stabilize, and it is NOT something they can treat. It's just this horrible, insidious thing. It turned me from a vibrant, smart, somewhat mouthy med student into this blob who doesn't do much besides lay on the couch, sometimes sleeping and sometimes watching TV. Nevermind that I'm "supposed to" be at work or writing some paper or doing the dishes or something, anything besides laying there and watching my life get more and more unlike anything I'd ever imagined.

So now I am wondering if I will even finish this degree, and I know that my body won't let me do any kind of meaningful job even if I do finish this degree. I am not sure that I will be able to finish this degree because I am just not able to do much of anything a lot of the time. I lay on the couch. That's about it.

[Kira]

I used to be a swimmer, fast and lean and still ready to go out with friends or stay up late at night even after long, hard practices. I made varsity as a freshman. But now, if I swim more than a few yards, my muscles literally die, turning into white-hot, weak, useless flesh intent on self-destructing... and the pieces of me that used to make up muscle, strength, and stamina are now just dangerous little molecules, myoglobin and potassium and lactic acid and so on... strength reduced to molecules, turning my urine red-brown-black as my kidneys try to get rid of those molecules, once parts of my muscles, now turned to searing pain and life-threatening poison.

[GardeniaGirl]

Kira - like you, when I think back to the years before my disease started, the reality of how debilitated I am now really hits me.

I remember when I worked a 40-hour per week job, took a couple of night classes each week when I was getting ready for grad school, would lap swim a few hours per week, maybe go for a run, go out to a nightclub at least one night on the weekend, and for an all-day hike in the mountains on Sunday.

Then be ready to get up for work Monday morning feeling refreshed and invigorated.

Laying it out like this makes me realize how far down my body has gone in the past 10 years.

[debhun]

I am so tired of hearing exercise exercise. That is your trouble you don't exercise. Well excuse me. But I wish I could exercise and all my pain will go away. It just don't work like that sorry. But I am going to try curers. My daughter is a heart Patient and she goes and has no trouble. So I may try that after we get back on out feet.

Mark It is bad that our dreams are taken away from us. I think you and I are the same age. My kids are grown and gone. It is to be time for me and Hubby to do what we would like to do now. But it is a day by day thing. One of my loves is fishing. I would fish all day or all night even if I didn't catch nothing just being out on the water is great. I would love to move to the beach one day. But that will never happen now. I can't do much fishing any more.

Deb

[Boxerlover]

Mark, good topic. I was a fitness professional and athlete. Now just walking the dogs is a challenge. For the previous 6 months or so I was having a real bad time accepting this as my life. I guess I figured if I just plain refused to accept it, it wouldn't be true:( . Unfortunately that is not the case and I am back to a somewhat calm acceptance of it.

If I am lucky to have a few good days in a row, I immediately start thinking of going back to work. I get excited until the moment my body reminds me that there is a reason I am on disability.

This weekend in my area was the 3-Day walk for the cure for breast cancer. When I saw the news coverage I cried, normally I would have organized a team and we would have been leading the pack.

Yes, I absolutly feel trapped in this body, I want a new one:D !

Melissa

[Mark N]

Melissa, wouldn't it be nice to have our old bodies and do the things we used to do? I can imagine how a walk like yesterday's would hit you so hard.

Deb, yes it is a terrible thing to have our dreams taken away.

GG, it does hit you when you write it down and have to face up to how far we have fallen from what we could do a few years ago.

Debbie, the only advice I can really give you is keep looking for a doctor until you find one that listens to you and doesn't tell you exercise will solve your pain problem. There are good doctors out there but you may have to search to find one.

Kira, your situation reminds me how fortunate I have been. I dealt with alot of pain every day to accomplish what I did but I was able to work through it for years. Your situation is bad because you don't have the opportunity to work in pain for years so you can accomplish the things you wanted to do. You thought at each stage that you could pause and get back on track but your disease was more invasive than that. I am sorry you haven't had the time to achieve what you wanted to do.