Coming to terms with my new life

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skrape
Regular Member


Date Joined Feb 2009
Total Posts : 141
   Posted 2/24/2009 1:23 PM (GMT -7)   
I am new to this board but I thought I would ask for any help with the life I find myself in now and the pain that has come to define me. For a while now (18 months) I have been hoping that each new thing the Dr. came up with would "fix" me. I have come to a realization, and this is probably why I am seeking out fellowship here, that my life is different now. Ever since I had my accident, I have had to avoid certain things and give up others entirely. I am fairly young, 29, and I keep hearing that it is such a shame that this happened to me when I was in my mid-late twenties.

I am no longer a person who can physically do whatever I like. If I am truthful, I am no longer a person who can sit up for any real length of time. For a while now I have been thinking that the exercises would fix me or the inversion table therapy would fix me or this or that. I know that there are a lot of other things that I have yet to have a chance to try. Soon I will be going in for TENS therapy and I now hope that this will help relieve the pain, not make it go away. I have read a lot about people in my situation. I seem to have had fewer diagnosis and fewer procedures than most but I have yet to find anyone who has said that they had very bad back pain for a year and a half straight with no clear-cut reason and then had it go away. I am starting to come to terms with this; that this is the way I am now.

Does anyone else remember the time period in which this realization set in? I would be interested in hearing about this. No medical person has come right out and said to me, "hey, you are like this for good" but I don't think they really have to at this point. I think I will be in a better situation mentally for what is ahead of me after I come to terms with my life. My Dr. was talking about a pain pump the last time I saw him (as something we may need to do in the future) and this scares me a bit. I don't like to think that I am so badly broken that I need a pump to keep my back from driving me crazy. I have not had any mental therapy for my condition or anything like that. I have read on here a lot about people seeing psychologists to help them with the mental aspect of constant pain in their lives. I don't know if this would help me or not.

I am just curious since there are a lot of people on here that have lived with this a lot longer than I have. I know I have a lot ahead of me and there is a lot that I have already been through but that this is now just part of the way things are.


Thanks,

Skrape
Fentanyl Patch - 50mcgs, Norco - 10/325 x 4


bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 2/24/2009 3:51 PM (GMT -7)   
Hi Skrape,

I have been in constant pain for 12 1/2 years and I tell people that the hardest thing about my situation is coming to terms with my limitations. I have exhausted every type of conservative treatment short of a witch doctor (and I probably would try that too if I could find one, HaHa), and have had numerous surgeries, all of which were supposed to make things better and I have gotten some relief from a spinal cord stimulator/intrathecal pain pump combination, but on a good day it is about a 25% reduction in pain and other days, I am not sure that anything short of divine intervention could help.

I don't mean to say that none of these things will work for you, because I know some people have much more success than I have, and I truly hope that you are one of those people.

I have sought some help from a psychiatrist and a therapist, because I had a nervous breakdown over struggling with whether or not I was going to have to stop working because of the pain. I was one of the few lucky people in this world who absolutely loved what I did (I was a teacher in a jail), and could have easily saw myself doing that job for the next 30 years, and for the first four years after I was injured (in a car accident), I did keep on working, but it was getting more and more difficult every day, and on the days I worked, I could not do anything else. As a mother of three, I decided that whatever I could do each day I was going to do with my kids. My experience with psychiatrists was that they just wanted to put me on some kind of anti-depressant and be done with me, which I probably did need, but I thought that they were going to spend time helping me deal with what was going on in my head and I felt like they couldn't care less. Maybe I just didn't find a good one, but I just didn't feel like it was for me.

I do struggle with bouts of depression & anxiety when I think about the fact that I can not be the kind of wife and mother that I want to be or was, and when I look at what a mess my house is when I used to keep a spotless house before I was injured, and I wonder if we would be struggling as much financially if I was still able to work & I realize that there is absolutely nothing I can do to make things better. But, to some degree I think I have accepted my limitations & I do what I can when I can. I try to modify the way I do things in order to keep doing as much as I can, like sitting in a chair when I cook or asking for help for what I know will cause me more pain, like taking laundry out of the washer or dryer, but I can still start a load of laundry and I can usually fold it, but I ask for help putting it away.

I have a friend who is in pretty much the same situation that I am, and being able to talk to someone who truly understands what I am going through helps me, that's why I joined this site. My biggest pet peeve is when someone who is perfectly healthy says "yeah, I had a backache one time that kept me in bed for a week, I know exactly what you are going through, you just have to suck it up and keep going!

I hope I have helped in some small way. Take care.

Bluejet2

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 2/24/2009 5:15 PM (GMT -7)   
Skrape,
Even though I'm much older than you (I'm 59) and was mainly injured from a bad fall about 4 years ago, I still struggle with acceptance of the changes this is bringing to my life. Many people on this site are farther along the process than I, which is helpful to see, but giving up what you thought your life would be at any age is challenging, to say the least.

And like Bluejet I wanted to keep working. I felt I had another decade to really finish the work I wanted to do, but it doesn't appear I'm going to get it. Since I don't have children, my work meant a lot to me. It's be kind of like my child and I spent many years teaching, and many years in the "doing" aspect of my work, and hoped to go back into education for awhile in a way that wove them together. But I can't sit for long, certainly without pain, and can't stand or walk much either. And then there's the effect of all the medications.

There are so many losses to grieve, but one thing your youth does give you is hope for new treatments, new medications....something that may help you get functioning more than you are now. But your post is wise for your age - you're recognizing very soon in the process that things have changed for you. I think in some ways we all have to figure out how to re-invision our lives and re-invent ourselves in ways we had never thought of. I don't have the new vision for myself yet, although as I said on another thread I think in the briefest of moments I get a glimpse that it may be a relief to give up the struggle at some point. Yet for me that will mean accepting pain and poverty, and going on with these things are part of my life.

I don't know if this helps you or Bluejet at all, but your posts help me. This site has been a godsend for me - to find others that really understand our struggles in so many areas of our lives.

I'm so glad you both found us!

PaLady

bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 2/24/2009 8:54 PM (GMT -7)   
Hi PaLady;

I, too, am very grateful that I found this sight and people that truly can empathize, and I am glad that my experiences can be helpful.

Bluejet2

edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 2/24/2009 9:43 PM (GMT -7)   

Hi Bluejet,

Welcome!  I remember very well the day I realized that circumstances were out of my control, I was afraid to verbalize it or even think my situation was permanent.  I did what I had to do like a robot, I gave up my job I loved and entered the world of CP, Pain medication, frequent PMD visits, Physical Therapy, Accupuncture, Chiropractic visits, MRI's etc. etc.  I never really said it out loud I just did what I needed to do.  For the 1st few months, I spent most of my days in bed, the pain was unbearable, I would get up for a few hours, cook meals for my family, pretend like I cared and back to bed I went.  What I realized months later was I was grieving for the person I used to be, after 35 years of working, supporting myself, then my family, I realized I was now totally dependent on someone for financial support and for physical things I could no longer do.  It was AWFUL!!  I am usually a very positive person, have strong spiritual beliefs and always believe that everything happens for a reason.  One day it was like the lights came on and I decided I could either be miserable in pain or I could live my life and learn to deal with the pain.  I began to be grateful for all that I still could do and before long I was accepting my NEW life instead of feeling sorry for myself.....don't get me wrong there are days that I wonder why this has happened to me and get really angry, bitter, sad and weepy...!  For me the depression was definitely situational.....as new symptoms appear and pain gets worse, I do what I have to do to make it through the day!  Any new treatment that I hear about I research and discuss with my PMD.....I do everything I can to help myself, I've said it before in prior posts, if in the morning I can get out of bed and walk, I know I can make it through the day.....one minute at a time!

I hope no one gets offended but I also believe in Guardian Angels and ask for their help continually throughout the day!  I chose them over therapy tongue  

edt (Patti)  


fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 2/24/2009 10:44 PM (GMT -7)   
Skrape, I am also sorry to hear that you are finding yourself in this life changing situation. PAlady was so right when she stated that there is a grief process that we all go through. No two person go through that process the same way in the same timing. I have been fighting this CP for over 11 years. I still work full time but pay a high price for it. I saw all the things I gave up as I was raising 2 sons and a daughter. There are days that I struggle with this horrible, uninvited, disabling, life robbing condition known as Chronic Pain. But I fight with all that I have. I Try and concentrate on the things that I still have in my life instead of just those things that I have lost or given up. You will find that there are days when you need to be encouraged and days when you get to be the encourager. I taught a class this week that if they feel like they are going through hell, don't stop because it is not a good place to set up residence.  

Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 2/24/2009 11:34 PM (GMT -7)   
Well I develped fibromyalgia at age 28 and a couple years after that my back went on me. It was a combination of bulging discs, spinal stenosis, arthritis and other things that resulted in surgery. I had been laid up in bed for two years with two young daughters to raise. I ended up with a mental breakdown and stuggled terribly. I had a career as an ICU RN and had to recreate myself by going into home health nursing. I ended up as the Administrator and had to retire from a wonderful career at age 49 because of severe depression, fibromyalgia complications and back pain.

After I retired, I got progressively worse with all my symptoms over these past few years. But you know what happened? My daughter had my first granddaughter about four years ago and my job is to watch her while my daughter works during the day. Is it physically hard? Sure it is, but you know I feel so fulfilled in my life that the pain is bearable. I still have some depressive bouts, but my little granddaughter makes life worth living.

I now have a second granddaugter baby who is three months old. I am concerned about the physical stress on my deteriorated body. But somehow I will do it, because I will feel fulfilled doing it and the oldest one will be off to start school in the fall. My life has made surprising changes that keep me going and I am grateful to God for that.

Hope my story helps a little.

Gentle Hugs,

Lindaloo
Moderator Chronic Pain
 
Believe in yourself.  Be kind to fellow humans and animals.  Take time to smell the flowers and the coffee.
And by all means, when you are down, ask me for help.  I will be there.
 
Linda


mom9mom
Regular Member


Date Joined Sep 2008
Total Posts : 489
   Posted 2/24/2009 11:35 PM (GMT -7)   
Skrape I am sorry that you are in this much pain at your age but I am glad that you found this site.You will find that it helps so much to be able to talk to people who understand what it is like to deal with the C/P every day.It sounds as if you are coming to grips with the fact that in all likelihood you will be dealing with this for now on.It takes some people a long time to accept the C/P.I think it is better for you the soonest that you do because then you have to just go from there instead of trying to get back what you had. I just want to warn you that you need to watch out for depression and deal with that if it happens to you(Most people who have C/P have depression).Well all I have left to say is welcome and if you need help just post and someone hear will be able to give you some advice.
Lost half of my small intestineJan.2008.Ilieostomy for 5 months then reverst in June 2008,Nerve damage to right leg,part of my right hip bone removed Jan. 2008,Cronic pain,hernia,infection in my back called discites,and depression.Gallbladder removed Nov,2008.Surgery to fuse L3 and L4 vertabra Dec. 31,2008.Mother to 9 kids 7 boys 2 girls and 1 stepson.4 grandsons,9 grandaughters.4 of my grandkids I inherited from my twin sister who passed away 6 1/2 years ago from a blood clot after surgery.God has given me my life back after I almost lost it.Even though its a painful and sometimes hard road to walk I take it one step at a time and give thanks to god for every step I take.


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 2/24/2009 11:52 PM (GMT -7)   
Hi Skrape,

Accepting a life with CP is not an easy thing to do. I've been dealing with my CP for just over two years & I still struggle with acceptance every day. CP effects us in so many ways. It takes away so many things that we love. I'm only in my early 20's & thinking about the possibility of dealing with this for the rest of my life is terrifying. No one can tell me whether or not my pain will ever go away because none of my docs have ever seen something like this before. I honestly don't know that I ever will be able to completely accept my CP. It might be easier for me to accept it if I had a real diagnosis, but even so, I still think that I'd struggle, as I doubt it would change much, it would just make me a little less frustrated. It is hard to realize that you now have limitations, major limitations. I still try to push myself like I used to, but I just can't do the things that I used to do, or at least not without making accommodations. I try my best to stay positive, and focus on the good things, but keeping the faith isn't always easy. I've really been struggling lately, although I'm starting to recover a bit. I think probably the only thing that will help is time. A lot of time (for me anyway).

Oh, and on another note, welcome to HW! As you've already realized, there is no better place to come for support from people who truly understand what it is like with CP!

Skeye

Post Edited (skeye) : 2/24/2009 11:55:56 PM (GMT-7)


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 2/24/2009 11:54 PM (GMT -7)   
Hi Skrape!

Wow, you are an amazing person! I don't think I would have had whatever it takes to accept all of this at your age. I admire your strength...even though you may not feel strong.

I'm not sure I have a defining moment when I realized my pain was here to stay. It happened along with another life altering event in my life so it all is blurred together. My son passed away in 2000 at age 23 and my life changed forever. I had been having some nerve pain before but within a year after his death this new muscle pain went crazy...it's fibromyalgia. Since the pain in my heart was so intense it was hard to discern it from the physical pain but somewhere between 2003 and 2004 I came to realize that this pain was with me for life. I do have a wonderful doc who does whatever he can to keep me comfortable and encourages me to keep living my life, within reason.

Thanks for starting this discussion...very interesting and thought provoking,
Chutzie
Co-Moderator Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, PTSD, dermatitis herpetiformus, osteoarthritis and a few other side dishes.
***************
Happiness is something to do, someone to love, and something to hope for."
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White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted 2/25/2009 3:10 PM (GMT -7)   

Hi Skrape

I am also new to this Forum, ( Thank-You Forum Moderator Chutz for introducing this Site to me) But I am not new to the world of CP, 97 was many years ago for me, and I have experienced many changes in my life since then because of the pain.

 I don't know that I ever had a time when the "realization" set in that this is how my life is going to be! Maybe I have never thought about it that way. I know I never really thought about CP being  my constant partner. Over the years it just kind of happened. . Your post has bought back many memories as well as reading the post of others. You do seem so young but your post shows the  maturity of someone much older. I really think living with CP can do that to a person. It changes them, there priorities become different, heck ones life becomes different! Anyway I just wanted to chime in on this post, but I don't want to take anything away from this one, so I will start a new one to introduce my self! Good Luck to You

 


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13455
   Posted 2/26/2009 8:28 AM (GMT -7)   
Hi Skrape,
 
Wow, such words for someone so young. My heart goes out to you, as I think sometimes we think we have to be older to be hit with this crazy chronic pain. Then someone such as yourself comes along and reminds us chronic pain has no age limit. We do have some young ones on this forum that suffer too. Welcome to Healing Well, I don't think you will find a better place to come and hang out and air out your thoughts. Everyone here understands chronic pain all too well.
 
For me its hard to define my moment of realization, because prior to the chronic pain rearing its ugly head I had spent 18 months trying to get crohns disease into remission,lol sure, had a small bowel resection surgery, terrible drs that woud not help me because I cannot take steroids. Crohns disease destroyed my life as I knew it, oh yes, I suffered alot of of gut wrenching doubled in pain with it. I actually had a meltdown and ended up under the care of a wonderful psychologist that understood autoimmune diseases. She helped me in so many ways, she helped me understand how I was going thru the grieving process of having to stop working and get on SSD, I was not able to leave my home much because of incontinence, I literally became house bound. I was a very active outgoiing person, we did alot of travleing. Everything thing we normally did in our lives came to an abrupt halt almost overnight.
 
My chronic pain reared itself several months into the crohns disease battle. I was referred to a pain mgt dr by my gastro. My gastro literally saved my sanity. He has been wonderful and I have been under his care for 6 yrs now. He did help me alot, he was not afraid of me because I have bad tolerance issues with all medications not just pain meds. I had ran the gambit years before on alot of treatment. Its always been the joke the amount of money that has been spent on my body I should feel like a million. But I don't. I had taken some falls at home and ended up having surgery on both knees, one for a partial tear of the ACL and the other was a torn menicus. I had got to the point walking was almost impossible. I spent about a year in bed I just could not manage things.
 
I ended up having a pain pump inplanted June of 05 and I have to say it was the best that could have happened to me. The oral meds were not helping very long if they helped at all, or the side effects were too bad and I had run out of options. I now have a new pain mgt dr that handles pump patients only and she is wonderful. I had no clue I could feel this good ever again. I saw that talked about with you. If you get to the point thats what you end up doing let me know, I can give you some questions to ask your dr about the pump. Or if you have any questions I will be glad to answer them for you if I can.
 
I hope you will hang out with us its a real good place to come to.....Susie

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