You know how sometimes things just pop into your head? Well, they do mine. For some reason yesterday, I guess it was while I was sitting my IC doctor's exam room waiting for him, killing time playing with my phone, checking email etc. It dawned on me I've been seeing my IC doctor for 11 years now. That's a long time, especially in medical terms. Well, it's a long time to me anyway. I know there are patients out there that have been struggling with their IC for even longer. But any way you look at it, 11 years is a long time. My niece is 21 and she's spent half of her life watching me be sick. That's a long time.
That's when the thought hit me: I don't remember what it's like to NOT be sick. I've actually adjusted to this life with all it entails. I have my routines, my doctor appointments, my nurse appointments, my medications, my instillations and so on. I am used to it. In the beginning it was life changing as I think it is for all of us diagnosed with chronic illness. In the beginning it's really hard - not that it ever gets "easy". But early on, it's common for all of us to struggle to figure out how to live our lives with our new disease. Can we still work? What can I still do? What do I have to give up? And it's not at all unusual for this process to be emotional and difficult to deal with. It was for me. And it's still a work in progress. I still work with my therapist on coping with how having IC and everything else I have, has changed my life but I think I've made great strides in the coping area. Well, until I have a meltdown when something goes wrong!
But it's strange to me that this has become my "new normal" and I've completely forgotten what it feels like not to be sick. Of course I remember events, fun times, things I did. But I have to really think about it to try and remember how I felt during those times. I was just not sick; I was fine and I could do whatever I wanted.
We're all different and we all cope in our own way. For me, planning is a big thing. And I don't remember ever being that way before. It's a new, more "learned" behavior that developed when I got sick. It doesn't bother me that I'm like that. When given proper warning, I can decide if I want to do something or not and if I do, then I can make appropriate plans and do what I have to do to so things go well.
But as for feeling healthy and well and not spending all my days figuring out how to get through each day - I just don't remember. I can look at pictures of me skiing, at the beach, going to the theater with my niece, friend's weddings and remember that I was there. Remember it was a good time. But it feels so far away, almost as though I'm looking at someone else's life.
Sometimes I lay in bed before falling asleep, thinking about the good times. It's like opening a jam packed filing cabinet that I have to dig through to find the memories from before I was diagnosed with IC. Until I can find the memory in the file cabinet, I just don't remember.
That's when the thought hit me: I don't remember what it's like to NOT be sick. I've actually adjusted to this life with all it entails. I have my routines, my doctor appointments, my nurse appointments, my medications, my instillations and so on. I am used to it. In the beginning it was life changing as I think it is for all of us diagnosed with chronic illness. In the beginning it's really hard - not that it ever gets "easy". But early on, it's common for all of us to struggle to figure out how to live our lives with our new disease. Can we still work? What can I still do? What do I have to give up? And it's not at all unusual for this process to be emotional and difficult to deal with. It was for me. And it's still a work in progress. I still work with my therapist on coping with how having IC and everything else I have, has changed my life but I think I've made great strides in the coping area. Well, until I have a meltdown when something goes wrong!
But it's strange to me that this has become my "new normal" and I've completely forgotten what it feels like not to be sick. Of course I remember events, fun times, things I did. But I have to really think about it to try and remember how I felt during those times. I was just not sick; I was fine and I could do whatever I wanted.
We're all different and we all cope in our own way. For me, planning is a big thing. And I don't remember ever being that way before. It's a new, more "learned" behavior that developed when I got sick. It doesn't bother me that I'm like that. When given proper warning, I can decide if I want to do something or not and if I do, then I can make appropriate plans and do what I have to do to so things go well.
But as for feeling healthy and well and not spending all my days figuring out how to get through each day - I just don't remember. I can look at pictures of me skiing, at the beach, going to the theater with my niece, friend's weddings and remember that I was there. Remember it was a good time. But it feels so far away, almost as though I'm looking at someone else's life.
Sometimes I lay in bed before falling asleep, thinking about the good times. It's like opening a jam packed filing cabinet that I have to dig through to find the memories from before I was diagnosed with IC. Until I can find the memory in the file cabinet, I just don't remember.
From the Memory Filing Cabinet Before IC:
Me After Finishing the Chicago Marathon - October 1989
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