The last few days I've had quite a few moments where I have forgotten about my ostomy and my bag. Granted, it has been when the bag was empty so there was no pull or weight to it on my abdomen. But truly, my body was not in the forefront of my mind on various occasions. To 'normal' people it probably doesn't mean much, but as a sick person who for almost 4 years, has been so physically self aware at all times it's unbelievable. Everything you see, and do is secondary to how you feel. Let me explain. For going on 4 years I have 24/7 been keenly aware of my body, my intestinal processes, my pain level and the proximity to the nearest bathroom. For the most part I knew exactly what part of my guts were working, when. Who can say that? Even at night when I slept, the pain from my disease has crept in to my dreams. If I went to bed pain free, I would dream I was being stabbed or hurt and in severe pain, and wake up in pain. It had started while I was asleep. I guess my body wanted me to pop a pain pill!!
Going to a mall was very often, not an option, because we all know you need to take a cab to the bathrooms in malls and department stores. They are always half a mile a way. When you have IBD that is a half mile too far. Sometimes, 2 feet is too far, too late. Every decision I made during that time was weighed and measured carefully in terms of the situation. Car ride? How far, how long? Go for a walk? Sure, up and down our block because if I'm too far it might be a disaster. A movie? Nah- I'll rent that shit!! Theatre bathrooms are always gross!!The smallest and most basic activities and decisions were shadowed by how bad my flare was that day. It controlled my life. If you could even say I had a life.
When you are chronically ill you are aware of the most minuscule bump in the road while driving. I seriously used to get shooting intestinal pains from it. The bounce. The seatbelt. I've had canker sores so bad that it was all I could do all day was be overwhelmed by the pain. I couldn't think, or accomplish anything. Forget speaking. Anytime I would attempt to eat out it was a game of what would work, and what would kill me. Many times I would not make it home after eating out. Hell, I wouldn't make it out of the restaurant. Eating was Russian Roulette.
I had never been a self conscious person, but being sick gave that to me as a big lame gift. I was self conscious when I was 98lbs, underweight and bony. I had bruises from IVs and I could feel every eye wondering what my story was. I was self conscious when I was on steroids and then my weight swung the other way and I was the heaviest I had ever been. Bigger than when I was pregnant. My face blew up until I would stare at myself and not know who I was. I was self conscious of how uncomfortable I was in that body. It didn't feel like mine. I felt trapped. Even now, I'm a little lighter than my normal, but I am aware (not self conscious) everyday of my bag and my ostomy. Especially when it's burning or itching. I feel it puff up and alter how my clothes fit. If I'm wearing the belt, I feel that especially in the heat.
All this is why it has been so amazing that the fact that I have an ostomy has disappeared from my mind, even for a second, more than once. It's not like I forgot, it's just that I stopped being hyper aware for that moment. I think it is because I have my life back, for the most part. The pain is gone, the fatigue, the arthritis, the canker sores, the blood loss, the urgency. Gone. Life is as it was. It's like I never had UC. In those few fleeting moments I let it go. The history disappeared. Looking at my body right now is the only way I know I was that sick. Looking at the scar and ostomy. Otherwise, it's like my health hit rewind. I'm not 100%, don't get me wrong, but if I had to stay at this point and this moment I would be happy.
It is incredible to think that a few weeks ago I was crying and frustrated and not knowing if I could make it. Now I could probably change my wafer and bag in the dark with one hand. No kidding. I don't even think about it anymore.
I've learned my self awareness and self consciousness are not always partners in crime. As I've gotten healthier the self consciousness has dropped off. Even the physical awareness has tapered. I still know more about guts, autoimmune disease and meds than I ever imagined I would but at least for the moment,
I have more a level playing field. My guts (or lack of) don't determine my days anymore. I can focus on real life stuff, and not the pain. I don't have to be afraid to be across the mall from the restroom. I'm not afraid to go out to dinner or sit through a 3 hour class.
I could easily still be fighting, and losing. I was losing physically, mentally and emotionally. I was just barely going through days. I wasn't enjoying them. I couldn't enjoy them. Now, I'm taking back over. Me forgetting my Stupid Stoma for a moment showed me that. I've got more going on than my ailments. They ride shotgun now. I'm back behind the wheel. =-)
Healing is a matter of time, but it is sometimes also a matter of opportunity.
Hippocrates
Me, not aware of my stoma or bag. For the moment! ------->
The last few days I've had quite a few moments where I have forgotten about my ostomy and my bag. Granted, it has been when the bag was empty so there was no pull or weight to it on my abdomen. But truly, my body was not in the forefront of my mind on various occasions. To 'normal' people it probably doesn't mean much, but as a sick person who for almost 4 years, has been so physically self aware at all times it's unbelievable. Everything you see, and do is secondary to how you feel. Let me explain. For going on 4 years I have 24/7 been keenly aware of my body, my intestinal processes, my pain level and the proximity to the nearest bathroom. For the most part I knew exactly what part of my guts were working, when. Who can say that? Even at night when I slept, the pain from my disease has crept in to my dreams. If I went to bed pain free, I would dream I was being stabbed or hurt and in severe pain, and wake up in pain. It had started while I was asleep. I guess my body wanted me to pop a pain pill!!
Going to a mall was very often, not an option, because we all know you need to take a cab to the bathrooms in malls and department stores. They are always half a mile a way. When you have IBD that is a half mile too far. Sometimes, 2 feet is too far, too late. Every decision I made during that time was weighed and measured carefully in terms of the situation. Car ride? How far, how long? Go for a walk? Sure, up and down our block because if I'm too far it might be a disaster. A movie? Nah- I'll rent that shit!! Theatre bathrooms are always gross!!The smallest and most basic activities and decisions were shadowed by how bad my flare was that day. It controlled my life. If you could even say I had a life.
When you are chronically ill you are aware of the most minuscule bump in the road while driving. I seriously used to get shooting intestinal pains from it. The bounce. The seatbelt. I've had canker sores so bad that it was all I could do all day was be overwhelmed by the pain. I couldn't think, or accomplish anything. Forget speaking. Anytime I would attempt to eat out it was a game of what would work, and what would kill me. Many times I would not make it home after eating out. Hell, I wouldn't make it out of the restaurant. Eating was Russian Roulette.
I had never been a self conscious person, but being sick gave that to me as a big lame gift. I was self conscious when I was 98lbs, underweight and bony. I had bruises from IVs and I could feel every eye wondering what my story was. I was self conscious when I was on steroids and then my weight swung the other way and I was the heaviest I had ever been. Bigger than when I was pregnant. My face blew up until I would stare at myself and not know who I was. I was self conscious of how uncomfortable I was in that body. It didn't feel like mine. I felt trapped. Even now, I'm a little lighter than my normal, but I am aware (not self conscious) everyday of my bag and my ostomy. Especially when it's burning or itching. I feel it puff up and alter how my clothes fit. If I'm wearing the belt, I feel that especially in the heat.
All this is why it has been so amazing that the fact that I have an ostomy has disappeared from my mind, even for a second, more than once. It's not like I forgot, it's just that I stopped being hyper aware for that moment. I think it is because I have my life back, for the most part. The pain is gone, the fatigue, the arthritis, the canker sores, the blood loss, the urgency. Gone. Life is as it was. It's like I never had UC. In those few fleeting moments I let it go. The history disappeared. Looking at my body right now is the only way I know I was that sick. Looking at the scar and ostomy. Otherwise, it's like my health hit rewind. I'm not 100%, don't get me wrong, but if I had to stay at this point and this moment I would be happy.
It is incredible to think that a few weeks ago I was crying and frustrated and not knowing if I could make it. Now I could probably change my wafer and bag in the dark with one hand. No kidding. I don't even think about it anymore.
I've learned my self awareness and self consciousness are not always partners in crime. As I've gotten healthier the self consciousness has dropped off. Even the physical awareness has tapered. I still know more about guts, autoimmune disease and meds than I ever imagined I would but at least for the moment,
I have more a level playing field. My guts (or lack of) don't determine my days anymore. I can focus on real life stuff, and not the pain. I don't have to be afraid to be across the mall from the restroom. I'm not afraid to go out to dinner or sit through a 3 hour class.
I could easily still be fighting, and losing. I was losing physically, mentally and emotionally. I was just barely going through days. I wasn't enjoying them. I couldn't enjoy them. Now, I'm taking back over. Me forgetting my Stupid Stoma for a moment showed me that. I've got more going on than my ailments. They ride shotgun now. I'm back behind the wheel. =-)
Healing is a matter of time, but it is sometimes also a matter of opportunity.
Hippocrates
Me, not aware of my stoma or bag. For the moment! ------->
