Join Date: Jun 2003
Re: Transition stories?
Hey Gnotchi, I can only gues why such an important topic hasn't gotten any replies. I'm sure that a big part of it is when you truly have to live with pain for the rest of your life, you simply go through cylcles and learning to live with CP isn't much different than learning to live after an amputation or an injury that leaves you in a wheel chair. People skirt around the word acceptance like it's a bad thing but you have to accept what life deals you. Saying i refuse to accept that I have to live in pain is like an amputee refusing to accept they loss of a limb. All the meds in the world won't bring the limb back and all the meds in the world would just make living an intolerable way of life tolerable, untill you say no more or you want to change things.
I had my first failed back surgery in 93, then a failed fusion in 96 and a revision and extension that left me bed wridden for a year in 99. Having to accept that my life was never going to be the same and I wasn't going to be returning to work and had to file for SSD was one transition point. It's a point I have my own opinion about when I read about people that believe they have too much responsability or couldn't allow their family to loose their home or whatever responsable reason some how prevents someone from being disabled. What they don't seem to get is that being disabled isn't something you choose or decide it's time for. That same logic says why take the meds if all you need to do is suck it up and tough it out at work in 10 pain 40 hours a week. I doubt there is a doc around that believes a working person is in 10 pain. A 10 is supposed to be pain that's the worst pain you can imagine, I would love to meet someone that just had their arm ripped off by a piece of machinery but is going to wait tuill the end of their shift or their doc to call back and say it's OK to go home before they miss an hour of work that would throw their monthly budget off. That isn't posible by shear definition or at least Social securities definition. You either can or you can't work.
Another turning point was when I was first given pain meds to atempt to give me some quality of life back in 2001. Accepting I will be dependent on opiates and will still not be able to do the simplest things people take for granted was another turning point. After about 3 years of simply existing, I opted to have a pump implanted which gives me about equal pain relief as orals, but with 1/10 the impairment and side effects. Once my head was clear, continuing to just exist was something I coulld no longer live with. I had the best docs, the most advanced delivery system for meds and I'm still not able to walk through an an amusement park with my child for a couple hours. something I've never been able to do since the first failed surgery was 30 days before her birth.
Once the pump was implanted I realized the docs were doing everything they possibly could and everything I was willing to tolerate. They could veg me out and leave me in a daze for a few more years, but the price is to high, so the only other alternative was to examine what was my contribution to my own well being. Was I doing everything I possily could to improve my condition, life and marriage? I had certainly been tought and learned every excercise and strength building modality out there, not to mention spending years with PM psychologist learning to cope, relax when I hurt so bad I can't catch my breath and how to accept how my life has changed.
This certainly wasn't the ride my wife or I signed up for and planned. The biggest Turnng point was when I decided I was going to do everything in my power to improve my condition which meant excercise every day, regardless of how bad I felt. Sitting on the couch doesn't make it better, avoiding anything that might cause a flair doesn't make things better. The sedentary life , loss of muscle and endurance and weight gain only led me to a heart attack at 36. I'm sure the stress of loosing a home, going BK and not knowing how much longer I could exist like that didn't help much with my BP , not to mention the intractable pain.
I'm going to hurt regardless of what I do, how little I do, or how much medication I take. When i take a step or shift my wieght, bone grinds on bone,broken hardware shifts and screws pull out of the holes. I hurt if I do nothing, I hurt If I excercise, you don't really get used to it, but you can find ways to distract yourself, and when you start seeing improvements in your condition, whether it's simple weight loss or greater gains it does become easier when you start reaching goals you never thought possible.
I was able to loose 35 lbs, return to work part time, and go on the first vacation in 15 years this last June. I couldn't go back to my old job, but there are things I can transfer my skills to that don't require me to be on my feet 10 hours a day 5 days a week, that's just not possible. However I can get through the day, even go to work for 6 or 8 hours a couple days a week. I pay for it immensly but I hurt every night whether i worked or spent the day laying around doing nothing. I worked 5 hours today and I'll be lucky to get the pain under control tonight long enough to crawal into bed around 3 if I'm lucky. Only to get up at 6 to be the best parent I can be and be awake when my daughter leaves for school.
I crunch and grind bone on bone from a failed 6 level fusion, I snapped this set of hardware as quick as I did the last but I know more medication isn't going to fuse my spine or prevent the hardware from shifting with every step or any movement. The only way to stabalize my spine is to either wear a brace all the time which causes muscle atrophy and dependence on the brace for support or excercise and strengthen the weak areas, mainly the core muscles when it involves the lumbar spine. So that's what I do and it was the major turning point where I stopped blaming docs, realized more meds has a price I'm not willing to pay and realized it was up to me if I wanted to see my life, "The Glass" as half empty or half full.
I know it sounds cliche but your life is what you make of it, . You can either focus on what you have left or focus on what you have lost and blame other people for not being happy. Nobody but you can make you happy, There is no such thing as a pill that makes someone happy about being disabled or makes it easie to accept. It takes work on your part, not just the docs. There are wealthy people that are flat out miserable and poor people that know a happiness that money can't buy. Same goes for healthy people. I've met some pretty miserable healthy people in life and I've met people that make the most out what seems to be a terrible situation, whether it's a disabilty or a terminal illness. Every day can be a struggle or every day can be a chance to improve your condition and make the most out of what you do have. Worst case, If tomorrow I struggle to get through the day, there is always the next to make some kind of improvement.
Anyway, It's almost 3, I'm sure my spelling is getting worse and worse, but yes, I know what your talking about.
Take care, Dave