None of us are "ok" with it. I know for myself ive just SLOWLY learned to live with it some how. Theres not a moment im not in pain. I dont even remember what its like to not live in pain, so maybe thats "helped"?. Im young and for a very long time it made me angry that it took away my teen yrs and now my young adult yrs. But i learned that being angry all the time wasnt going to get me anywhere eather. I had to go threw the grieving prosses, that is very important. And there are still times that i do grieve and there are still days that i get tired, tired of it all, ready to throw in the towel and say screw it im done, but then i turn that into strength and i fight, because I will NOT let this beat me down. Im constantly doing my research and trying to find ways to get the help i need and treatments. There are days that the pain is so bad i feel like its just eating at me, or so bad that it can make me vomit, and on those days i medicate with the meds i can take and i sleep and rest because thats all i can do on those days. I dont talk about any of my crap anymore because most people dont understand it. I have 1 friend that does and she is the one that i can talk to and shes been an amazing friend, but she is the only one that i talk with about any of this. So turn all that into fighting! Do your research and fight to get the help you need!

Hey fresh.. I get through my days mostly just by accepting this is my life. I cant stop tomorrow from coming so I might as well move on.. its such a fight. most times I fight back the tears from the pain then some times I fight the tears from the sorrow. its hard not to feel like you've lost a preciouse part of your life . because you have but I wake up every day, and I do the best I can.
some days it is just laying on the couch not moving because if I do its hell times infinity.. but I have a new perspective on life that others do not.
we all share this, we just need to learn what to do with this.
you are not alone in your feelings. we all share them, and we are NOT ok with tho. but for right now we cannot change the fact that we have this beast. so we fight the fights we can, make friends with others with this so we can have help fighting it and then help others cope as well. I hope this helps. my mind is a little frazzled right now. pain levels up past ten today ..times 1000. so you can imagine getting a clear thought out is hard.. lol wait you dont have to imagine..
please be well and bring your fears to this forum so we may share , care , and help.

I think for me, I havent had a day without pain in forever. So finally after diagnosis reality set in, its not changing, so i have to learn to live with it. Slowly i am. I will say i was MUCH more negative before anti depressants. So maybe thats something you should talk to them about if you are not on them.

I battle with things still, and some days i stay in bed because i just cant deal. But every day i try to see as a new day, and do my best to get through it.

I hope you can find ways to cope. I read a lot, i bake ( sitting in a stool, and one handed) sometimes. I do things that i can, and dont do the things i cant. I have to set some boundries, but overall i am still living a "normal" life, most people dont even realize how disabling it really is.

I will be praying for you.

Well I was diagnosed when I was 16 but I had the symptoms from when I was 15. I get what you mean by grieving process, I still feel like I'm in it, We have yet to actually find something to help or someone to help. It has made everything harder, from school to guys to friends. I just feel like I don't have to positive outlook like you guys.

I have 1 friend. I cant drive (embarissaring right?!), and even if i could when i was 19 i devolped epilepsy (seizures) ontop of everything else. I worked full time, usally around 50hrs a week (i was 16 when i started working) and I was a PT tech and was hopefully going to be going to college to become a PT befor i was hurt. it was my love! i LOVED working! I loved doing my job, i loved helping people! And then a few yrs later, BAM im the paitent! And then i HATED it! My boss, the person i worked for, was then having to treat me is a paitent. Eventually i had to stop going because no progress was being made and we knew the outcome and i couldnt stand seeing my co workers anymore with out me actually working with them. I dont go out, its rare if i do. I dont date because thats just to complicated with all my health stuff. And yes i went threw the intial grieving prosses, that felt like it lasted forever, and theres many times i still grieve. Many times i still get angry. WHY cant i be a normal 22yr old? WHY cant i go out and have fun with friends and do whatever? WHY cant i drive? WHY do i have to feel this pain every single day? WHY did i believe it was just a simple surgery? Because that "simple" surgery changed my whole intire life! Every bit of it! And then i start having seizures, WHY me?! And these seizures arent even easy to treat because of what kind they are, my luck huh? and they cause so much pain when i have the big ones, they take such a hard toll on my body, so WHY me?! WHY am I having to go threw so much stress right now in this very moment because my little brother who oh gosh we love so much is fighting for his life after a surgery and now is trached and vented, and hes been in the PICU for a month now. so WHY am I having to go threw all these trials?! My personality COMPLETLY changed! The person that was very laid back and happy and sarcastic all the time is no longer there and hasnt been for a long time and never will be. I lost all my friends because of it. My family even struggled with it for a little bit because i wasnt me. What I saw in my paitents at work, I became myself and gosh i couldnt stand that. BUT its made me who I am now. Ive changed for the better and not for the better. I dont know if its nessisarly a "positive" outlook i have or how much i have, ive just simply learned to live, day by day and some days its just minute by minute. Ive learned not to take the little things for grandit. To apreciate everything you have, because you can loose it in an instant. And I havent found anybody to help me eather, most of us havent. But it doesnt meen you dont stop doing your research and fight to get the help you need. Look for drs to see, find one that can help, exspecially to manage your pain.