Tuesday, December 17, 2013

if i'd been given a healthy body, and a different life....

it's hard, sometimes. i don't want to sound melodramatic or like i'm feeling sorry for myself by saying it, but it's hard sometimes to be me.

before you roll your eyes, here's why:

i was healthy and normal until i turned twenty-two, at which age i was stricken with a chronic disease that responded to no treatment and was killing me. literally. (and not literally the way everyone these days seems to use it.....REALLY literally.)

the treatment? to have three grueling surgeries to remove my colon, make a "replacement" out of part of my small intestine (and a temporary ileostomy while my replacement pouch healed) and then a third surgery to connect it all and get rid of the ileostomy.

so....the surgeries themselves were hard. the recovery is hard and ongoing. i was given a six months to a year recovery time without the incidence of complications....

...and lately, i've been having complications.

i don't want to go into them. i am so tired of thinking about this....about ALL of it. i'm tired of complications. i just want to have the "normal" life i was hoping for once i chose the path of surgery. i made big sacrifices in choosing that path. i have suffered a lot physically and mentally. and i continue to suffer, seven months after my final surgery. i continue to suffer, in having complications that have onset recently.

and that's why sometimes it's hard to be me.

sometimes i just wonder what it would be like, to be a healthy twenty-five year old woman. i see people i know, having these busy lives, and wonder sometimes if i will ever have that. will i EVER be "normal" again?

i want to travel, i want to go on road trips with friends. i want to have just a night out, without being too exhausted or having issues with my stomach. i want to wake up ONE morning, and not be in pain. i want to get one night of sleep without waking up from pain and having to take a pill to get back to sleep.

it's hard because i hate complaining. it does no good to complain. everyone needs to let off steam sometimes, but i learned pretty fast that i was alone in what i was going through. when it's a battle with your own body, you're alone. it's not melodrama- it's a fact. your doctors are trying to help you....but it's YOUR body, and in the end.....you're the only one there 100% fighting. fighting in your sleep, fighting it every moment of every day. fighting it by ignoring it enough to have a life, when you're tired of your only life being the battle against your body. and after all of this....


i'm lucky that i've been able to work, because i love my job so much and it's one of the few things i can give energy to. it brings me joy and takes me out of my head for a bit, because i am 100% focused on my work when i'm there. but this past couple of weeks at work have been hard again. hard like they were before surgery, when i was so exhausted that i crashed for hours after my shift ended. it's been like that again, and i'm frustrated. the last few months at work i was so blessed to (mostly) have energy and REALLY apply myself and enjoy it. and then....the complications have worsened, and i feel almost like i'm back to before...when i can't give 100% to my kids, and my co-workers have to help me with some things....and i really, really hate that.

i just needed to write, to purge myself of this feeling which has been building the past few weeks. i drove myself to a christmas party for work tonight...sat in my car for a bit, and decided to go home. i just didn't feel well enough to go in. and as i drove home, everything compounded. i felt frustrated and angry and sad, because this battle has been so long and it's just not over yet.

and the thing is, even with all of this.....i can't say that i would 100% choose to have someone else's healthy body, or someone else's life if i had the chance. because truthfully, these past few years have sloughed off the things about myself i didn't like. i've been made in the refining fire of this illness, into the kind of person that i'm proud to be. i wasn't that person five years ago, before this all began. plain and simple. and i can go through life as the person i am now, and be happy as that person.

so THAT'S why it's hardest for me, really. i'm tired of all of this, but....i don't think i could ever really trade it. and i do believe that someday i will have a normal life, and i am already grateful in many ways for what i have been through. i believe that someday, i will be grateful for it all. i believe this is what will shape me, most of all. and from this, i found the love of my life in working with kids with Autism. so no, i wouldn't trade it.

i'm just tired. i need respite.

and then i'll go on.