This is just something I wrote down & need to share with people who understand. I’m really feeling like life is passing me by & I can’t stop it;( I feel isolated from everyone.
Pain has changed my life. It’s changed who I am. I’m no longer living life but just trying to get through it!
Having a chronic illness sucks! Being sick like this I’ve lost so much of my life. People ask how I am but they don’t really want to know, or they are tired of hearing the truth. It’s hard to not be me, or to not be honest, I’m not used to that, but like everything else in life that’s part of the change that’s going on that I can’t control. Being me, that’s all I’ve ever been. People may feel like, by me being honest, or saying oh my hip hurts that I’m complaining all the time, or being negative. That could not be farther from the truth. I’m just stating a fact, making an observation per say. It’s not meant to be whinny or negative. That’s not me.
I feel like I’m behind a big class window watching everyone else go on with their lives & I’m stuck, not able to participate in life. I used to do it all now I just push through without feeling, or thought, just trying to get done & move past without causing more pain & physical exhaustion.
I try so hard not to be cranky, or snap at anyone but sometimes when it feels like my skin is peeled back & my nerves are exposed so EVERYTHING is louder, brighter, more painful, it’s hard after, hours, even days of this to not be cranky.
When the touch of your loved one makes you want to scream it hurts so bad, but they don’t understand so you try not to show how bad you hurt.
People judge you & say oh, it’s always something new with her, or she’s always sick, or what a hypochondriac it’s hard to stay positive & want to be around people. You fear judgement.
Being a person who was always on time & always there for anybody who needed anything for my life to become the polar opposite is more frustrating for me then you, I promise. I hate letting people down, or canceling plans, or changing things at the last minute is so hard. Then the guilt kicks in & you feel even more worthless than before, so then here comes the depression. That’s an entirely new game.
Bottom line & my point is please, next time you think someone who has chronically bad health issues, don’t judge them, if you asked how they are know you may get the truth so if you can’t handle the truth, don’t ask. I promise you they are not trying to be negative or complain all the time, it’s just their live has changed & they are trying to deal with it, but usually don’t know how.
Sorry I know there’s a couple rough spots. I fixed some but don’t want to put it all up again just because I fixed some writing & grammar issues. I think you can figure it out;).
I know exactly how you feel. I fall in the trap of asking, "Why me?"
Most days, I want to ask those ignorant or judgmental people exactly why they think anyone would choose this life? We watch who we are diminish daily, and we can do nothing about it. We end up comforting people who don't understand when its they who should comfort us.
Its a hard life... but, for better or worse, it's the only one we've got.
Hello Jackie,
What a long post! But I think you have hit all the problems with this horrible condition, right on the head. This is a whole new way of acting. Your true friends will still be here for you. Others need educating, and it is not their fault, how can you expect anyone to understand this!
Take care, Anne
Hi Jackie,
I hope you find friendship and support here, it has been a great place for me when I am really struggling with this illness. Wanted you to know you are not alone and I am sending you hug. Madison
Hi Jackie, everyone needs to vent sometimes. The thing I've learned over the years is to work hard at not getting stuck in the venting period. I allow myself to vent on whatever I need to and then I push myself to move forward past it. When I don't do that I find I feel more depressed. There are several excellent articles on here that might be helpful to share with your family / friends. Here is a link to a great one, http://forum.livingwithfibro.org/forum/topics/great-article-on-understanding-someone-with-chronic-pain. Also, we have a group (under the groups tab) on communicating positively with friends and family, I invite you to check it out as you might find something useful. Hugs!