Pain

[Rylanesmom]

I am so frustrated with the quick decline in my health.  I feel at this point my EDS is causing me as much pain as my chiari.  I just don't know how I am going to function and complete the work required of me:( not really a question....just sad today.

[selmaS]

  The stages are  denial...anger, grieving, and acceptance......

We deny the problems , pains and issues until we can no longer ignore them.....

then we r angry as we can not get a Dr to listen to us, or we just can not do what we  want or need to.......

Then we grieve what we lost, the ability to do what we want, to enjoy many of the things we have b4, even the loss of who we were b4 the dx.....

finally we accept what we have , and what we have to work with, and how we have to manage to help avoid pain .....

[linnielou232]

It is kind of a chairian symptom reading all of these.  Seem's all of us we're workaholic's.  I also LOVED my job.  Work in food sv. for 23 yrs.  Worked 4 jobs sometimes.  I couldn't sit down.  So adjusting to all of this is so so hard.  It was the hardest thing for me also to go in and quit my job, but that door is closed and I know another will open.  As Selma explained on here at one time it is a journey we are on, but  we all are on different stages of it.  I thank goodness am on the last stage and that is exceptance.  Sorry can't share the other one's, I can't remember.  MMM!!!but it helped me to understand.  Thank goodness we have each other to be here for each other and help each other through this long journey.. We will get through it.  Just make's us stroner.  Bless all of you

[Rylanesmom]

I will pm you

[selmaS]

  What type of retail position r u in? I worked in retail and management up until my surgery...I was in for over 15 yrs.....it really got to be too many hrs, 70 plus a week....it is just not what a person with chiari is able to keep up with...or should I say me with chiari can keep up with, I know there are those that can : )

   "selma"

[Rylanesmom]

I am still working full time in retail management.  I do a lot of lifting, climbing ladders, and simply talking all day is mentally killing me at this point.  I also have EDS and today could not get my hip to quit dislocating:( I don't want to not work and I am scared.  I wish the doctors could just fix it all.  I seem to get worse by the hour.

[megthp]

I hear you...  been in and out of work twice now (and I know that's nothing compared to many on here).  Going back to my doctor and saying I couldn't work anymore due to my symptoms was one of the hardest things I've done.  I'm a workaholic, very career focused and being an attorney have done a ton of work to get where I am.  My friends and family had been telling me to stop for months at that point because it was so tough on me, and I got to the point that even I had to admit I wasn't able to do a good job anymore anyway.  Not only that, work took so much out of me that I just slept while I wasn't at work and my family wasn't functioning, my relationships were seriously suffering - I wasn't even taking care of my dog properly.  I owed it to them to stop.  The first two weeks home were awful but a bit of time has passed and I'm handling it better now...

Chin up.  It is isolating, but I find the only way to cope is to try to thrive on it (easier said than done).  Try to enjoy the time to yourself.  It makes the times when others are around so much more important and enjoyable.  Tell yourself how much you like time alone, and eventually you'll begin to believe it...

Hang in there...

[irislita]

...sorfy my phone...so there is no work we can do right..i mean it depends on each case...but i quite feel like sexybeare.before i went working partying...everything...but sleep a lot.it is frustrating as we r already ****** up with our destiny...but i feel it is so isolating...no work,no going out...just nothing but rest

[irislita]

Whaaaaaat...oh no pleeze.thats the question what kind of wo

[Sexybare]

Amen. I hear you on that one. I wish we were all normal. I fought with myself at work with the pain for 4 yrs before someone told me i wasnt crazy  i have chiari. When i got the call i was at work and alls i could do was think and cry. Do you have sick leave thru your employer? Maybe you could take some time off til you think you can go back? Im off on sick leave. I hate the fact that i may never be able to go back to my job. My pcp told me i shouldnt, its not good for me and it may make me worse. Thats hard for me to procesd. I want to work. He said theres really no good work when you have chiari. I hope you feel better soon.

[Rylanesmom]

I just feel that what I can do on a daily basis is decreasing quickly.  My work is demanding and I struggle to get it done.  On busy days when there are more conversations to have my brain is exhausted.  The physical part of work is killing me and it is so hard to pretend that you are ok to make it comfortable for everyone else.  I just want to wake up normal:(

[selmaS]

  Trust me I know what u mean....I wish there was something that we could do to relieve the pain....and to even know which one the pain is from....

All I can tell u is, stay indoors and warm...and think of summer as we feel much better then.....

   Sorry u r sad....