Hello. I am CJ, let me introduce myself. I am an almost 56 year old menopausal (Does it ever end? Is anyone ever post menopausal?) married 27 years (holy smoke!!) homemaker with two children, 25 and 22 years old. I still call myself a homemaker though I haven't really fulfilled this role for four or more years. I call myself a homemaker on those forms that ask "Occupation"? I do this because I can't think of any occupation title that describes what it is I do. This would be because I am not sure exactly what it is I do... anymore.
I hear the phrases, "I am not my disease" "My disease does not define me". This puzzles me. I am thrilled for those that can say this, those that can think of themselves and not think of their disease. I am in awe of their mindset. I have not gotten there yet. I have not even driven by it, much less walked. I am in the coliseum...at the very top...in the nose bleed seats...behind a column.
I am CJ and I have chronic illnesses. These illnesses, Fibromyalgia and Chronic Fatigue to name a couple, shape every portion of my life. I cannot think of me and not think of them. They have taken away so much of me. It truly is like a puzzle. I am the puzzle, a puzzle of many colors, of many small, sometimes oddly shaped, pieces. Fibro and CFS have smashed into the puzzle and have lost so many pieces that I am not sure if I can patch me up.
However, I am trying to put the puzzle back together, just like Ol' Humpty Dumpty's men. I am fairly certain it will not be the same shape it was before, some pieces are gone forever. Perhaps I can fashion some new pieces that can fit with the old. Maybe I can reshape some of these pieces to look somewhat like they did before, shape them well enough to fit in the puzzle.
If I am able to gather all of the pieces of me, how do I go about putting me back into some semblance of what I once was? My blog, CJ In Time has been surprisingly helpful in that effort. I am not sure what I expected when I started it, but it has become a lifeline for me. It began when I found "I Really do Miss Myself"(now Seeking Equilibrium). I could sure relate to that title. And, I found I could relate to Rose. And, Rose not only commented on my posts, she introduced me to other bloggers. I then found "Graceful Agony". This title I could not relate to...but boy did it intrigue me. How could anyone make agony graceful? Jolene has. And she has lifted me up, too, just like Rose, and Miss Dogkisses, and Lynn-Marie.
I have a long way to go, putting CJ together. Because of this chronic illness community of bloggers I am feeling hopeful again. One might think such a serious topic with such serious issues would be a total downer. But, we "get" each other. Even in our posts that whine, we get a lift. Someone always responds "I know what you mean" and, immediately we are not alone.
Hi, I'm CJ and I have chronic illnesses. But, I'm not whipped yet.
CJ, I love the way you write. You just get right to the heart of the matter. You are so right when you say our illness does define us. I don't understand how it cannot define you. It takes so much from us and I don't understand how to turn away from that and go back to a former life. Gee, if only we can do that!
ReplyDeleteWe have a community. We're like a giant quilt that has been sown together by this disease. Even though singularly we are weak, when we are sown together we get stronger.
You're not even close to being whipped yet CJ...we're all right behind you.
Hugs,
Rose
Ah shucks, Rose. You are too sweet.
ReplyDeleteYes, it truly helps to have such a supportive group of people behind us and standing up to these diseases. I am so very glad I found you all.
Gentle, warm hugs,
CJ
You wrote: Even in our posts that whine, we get a lift. Someone always responds "I know what you mean" and, immediately we are not alone.
ReplyDeleteMy response: Holy Cow that summed the whole thing up! Love that!
I share the CFDIS/FMS diagnosis with you.
Thank you for taking the time to share. I really loved how intimate and lively your intro was. I think in another life, we would have been great friends/neighbors! :-)
Great blog! I also have a hard time separating myslef from my illnesses...it's a work in progress! So happy I have a computer and the net to have all of my fellow chronics as a lifeline! Somedays when I feel like I just can't take anymore, I get on here and read some of these blogs and then I know I can make it, atleast another day! Thanks for sharing and caring!
ReplyDeletehttp://spicyt.wordpress.com
Thank you Dominique, for commenting on my post. I have spent the last hour or so reading "around" --jumping from here to there-- your blog. What a wonder you are! What a time you have had! And, how triumphantly you have risen! Yes, I know you have a ways to go, some big THINGS to get thru. But your attitude and your determination certainly shine thru all the pain and heartache and what must be excruciating fatigue.
ReplyDeleteI will pray for your resilience, for quiet times to re-coop, and for strength through it all.
Yes, I would think we could have shared "life" over the backyard fence.
Thanks again, Dominique,
CJ
CJ - our illnesses DO define parts of us, and no, the puzzle will never be the same as it was "before," but as we travel the path before us, sometimes we find new pieces to replace the ones we lost.
ReplyDeleteI've been at this a VERY long time (my fibro diagnosis was in 1996,) and I honestly don't remember what it was like NOT to live with constant pain. It has become "background noise," and although it shapes a big part of my life, I no longer allow it to be all of what (and who) I am.
That isn't an easy place to get to, and it's definitely not an easy place to stay (I frequently "backslide," especially on bad pain days.) I've had to stop defining myself by what I accomplish on a particular day, and begin defining myself by how I interact with others. If I have done or said or written something that has helped someone else, it's a good day.
I have been insanely busy, trying to sort through some things, and thereby haven't been able to keep up with blogs lately. I miss it. *sigh* Anyway... so I'm finally catching up on your blog. I love your honesty & heart in this post. Thank you for being so honest. I enjoyed getting to know you more and learning more about this process for you. We each have our own processes, and I totally do understand what you mean.
ReplyDeleteKeep pressing on. Don't let it whip you. You deserve better than that.
Thank you, thank you, thank you Spicyt (love the name!), Wendy, and Rochelle for commenting on my post. Spicyt and Wendy, I am glad to meet you and I am thrilled to have you share your thoughts about what I wrote. And, Rochelle it was so nice to hear from you again.
ReplyDeleteEach of you know how important it is to know that, yes, there is someone out there reading what you wrote and even more importantly that you are receiving much needed feedback and reactions to what you have to offer.
I know that there are many, many posts in the blogosphere and I am thrilled that you took the time to read mine and offer your encouragement and insights.
Gentle hugs,
CJ
I'm pleased to meet you through the Graceful Agony blog carnival.
ReplyDelete"Even in our posts that whine, we get a lift. Someone always responds "I know what you mean" and, immediately we are not alone."
Thanx for putting this into words.
Thank you Phylor, I am very pleased to meet you, too. And, I look forward to learning about you through your blog.
ReplyDeleteGentle hugs,
CJ
Hi CJ,
ReplyDeleteAgain, what a wonderful post. You sure do know how to say what needs to be said. I feel I've grown some simply by having read this one post. Thank you for writing. I think it's very hard to write in all the pain so when people like you, and Rose, and Jolene do it, then I am not only in awe but am grateful.
I feel the same way. Like I was shattered. Everything I believed in has blown up. Every day is a day to try to either put a piece of me back or let it go and try to find something to replace that part of me with.
I try to remember what I was like before the pain. I can barely remember anymore. I try to remember what it was like to be happy and that's hard too.
I can't say anything about me or my life without including PAIN. It is as much a part of me as my name is. So is fatigue. They are pieces of the puzzle now.
Thanks again for your wonderful way of writing! Your blog is awesome.
CJ.........ARE YOU OKAY???? WHERE ARE YOU??????
ReplyDelete