The graphic above pretty much explains life with Crohn's. At least until you realize you are not responsible for the disease. In fact, my GI says that Crohn's is part genetic and part environmental. Think of your genes like little computers. Computers run on 1s and Os. Genes run on and off. My Crohn's gene was turned on by something in my environment and while most if not all scientists believe it is a virus or an infection, I think it is stress.
I don't mean normal stressors that people deal with each day, but PTSD like stress. I have never lived a stress free life though I am much better at dealing with it now than I was when I was younger. I have lived through and have had happened to me mega stressors, life changing stressors the first of which happened when I was 5 and my father died.
I grew up in a household that did not discuss death and its ramifications. My mother cried behind locked doors she refused to open, my sister did not discuss it under any circumstances and since she was so much older than me a no from her meant a no period. Do not discuss. My brother, also many years older than me, God rest his soul, found his peace by sneaking out his bedroom window whenever the opportunity arose. So, I did not learn how to handle grief and the associated stress that comes with it. My doctor disagrees. He says stress can make Crohn's worse but it doesn't cause it. I can think of multiple occasions when a stressor hit and at the same moment, everything would drop from my stomach into my intestines and a bathroom had better be close. That is just my theory.
Inadequacy
People who live with chronic diseases often have brain fog. I know this because it is a frequent conversation starter. Brain fog feels like a dark veil falling across your mind that stops just above the eyes. For me it is a physical feeling, you hear and see what is going on around you but you just can't get it to stick in the brain. This causes major feelings of inadequacy because as hard as you struggle you just can't get the brain to kick into gear. I have given up expecting my brain to be any different. Problem is, people with this condition often make mistakes or they are forgetful or even find themselves pulling away from others because they just can't deal with the noise of outside life.
I no longer fault myself for this. I am doing everything I can to take care of myself and if my brain wants to excuse itself for a while and just not think, it is a small concession to a body under so much stress.
Disconnection
People with chronic diseases often feel disconnected from others. Many people don't want to deal with someone with a chronic disease. We tend to be introverts, we also like being alone. A quiet evening on the couch pain free is better than heading down to the nearest bar. Even when I was young I was not big on shopping days with the girls or concerts like my other friends. I mean, what if you needed a rest room? Port-a-lets are not the best place for urgent contemplation. Besides, what my friends didn't know is how scared I was. I was terrified by large crowds who blocked escape paths to a needed restroom. I felt much safer at home. I look back and think how sad.
Vulnerability
During and even after a flare I feel very vulnerable. I am generally tired, weak, and emotional. It takes a few days, weeks, months, to recover. I am sensitive especially to sarcastic humor. I take everything personally and though I have no idea why it makes me feel this way, it makes it very hard to stand up for myself. I just want to crawl into a corner and cover my head until the feeling goes away. I think I hate vulnerability more than anything else. I have discovered that a good B12 or a solid B supplement generally helps the situation even when you are flaring. Vitamins are the first thing to go when you cannot digest your food.
Confusion
Waking up in the morning is hard. You start off with a full body scan. Stomach hurt? Intestines swollen? Nervous? Scared? Still tired? Joints hurt? Back hurt? You just never know how you are going to feel and that feeling creates confusion. Want to go on a trip? Have people over for a barbeque? Yes in the morning and no in the afternoon. Want to go to a movie? Yea, great, uh no. I don't feel good. Is it any wonder Crohn's patients feel confused?
Helplessness
You do what you can but ultimately you are at the mercy of your body. I make sure I get enough sleep, eat the right foods, take my medicine on time, and keep stress low. When my brother recently passed, I headed straight into a flare that cost me 5 pounds and lots of blood. I did what I could by resting and eating soft foods, even abstaining for awhile.
I let my body decide if I needed to call my doctor and on the 4th day I felt better, still grief stricken, but I was surprised to wake up one morning with the pain gone. I still have flares that come and go, but I am learning to accept them. You'd think by my age I'd have this figured out. Sometimes I feel like my body is betraying me but it is important not to look at it that way. Instead, I focus on remembering everything Crohn's has taught me. My compassion and sympathy have grown exponentially. Empathy abounds in me and I no longer judge other people. You never know what that person is going through until you walk a mile in their shoes.
Tomorrow, we will discuss anger. An emotion that deserves a blog all on its own.
I don't mean normal stressors that people deal with each day, but PTSD like stress. I have never lived a stress free life though I am much better at dealing with it now than I was when I was younger. I have lived through and have had happened to me mega stressors, life changing stressors the first of which happened when I was 5 and my father died.
I grew up in a household that did not discuss death and its ramifications. My mother cried behind locked doors she refused to open, my sister did not discuss it under any circumstances and since she was so much older than me a no from her meant a no period. Do not discuss. My brother, also many years older than me, God rest his soul, found his peace by sneaking out his bedroom window whenever the opportunity arose. So, I did not learn how to handle grief and the associated stress that comes with it. My doctor disagrees. He says stress can make Crohn's worse but it doesn't cause it. I can think of multiple occasions when a stressor hit and at the same moment, everything would drop from my stomach into my intestines and a bathroom had better be close. That is just my theory.
Inadequacy
People who live with chronic diseases often have brain fog. I know this because it is a frequent conversation starter. Brain fog feels like a dark veil falling across your mind that stops just above the eyes. For me it is a physical feeling, you hear and see what is going on around you but you just can't get it to stick in the brain. This causes major feelings of inadequacy because as hard as you struggle you just can't get the brain to kick into gear. I have given up expecting my brain to be any different. Problem is, people with this condition often make mistakes or they are forgetful or even find themselves pulling away from others because they just can't deal with the noise of outside life.
I no longer fault myself for this. I am doing everything I can to take care of myself and if my brain wants to excuse itself for a while and just not think, it is a small concession to a body under so much stress.
Disconnection
People with chronic diseases often feel disconnected from others. Many people don't want to deal with someone with a chronic disease. We tend to be introverts, we also like being alone. A quiet evening on the couch pain free is better than heading down to the nearest bar. Even when I was young I was not big on shopping days with the girls or concerts like my other friends. I mean, what if you needed a rest room? Port-a-lets are not the best place for urgent contemplation. Besides, what my friends didn't know is how scared I was. I was terrified by large crowds who blocked escape paths to a needed restroom. I felt much safer at home. I look back and think how sad.
Vulnerability
During and even after a flare I feel very vulnerable. I am generally tired, weak, and emotional. It takes a few days, weeks, months, to recover. I am sensitive especially to sarcastic humor. I take everything personally and though I have no idea why it makes me feel this way, it makes it very hard to stand up for myself. I just want to crawl into a corner and cover my head until the feeling goes away. I think I hate vulnerability more than anything else. I have discovered that a good B12 or a solid B supplement generally helps the situation even when you are flaring. Vitamins are the first thing to go when you cannot digest your food.
Confusion
Waking up in the morning is hard. You start off with a full body scan. Stomach hurt? Intestines swollen? Nervous? Scared? Still tired? Joints hurt? Back hurt? You just never know how you are going to feel and that feeling creates confusion. Want to go on a trip? Have people over for a barbeque? Yes in the morning and no in the afternoon. Want to go to a movie? Yea, great, uh no. I don't feel good. Is it any wonder Crohn's patients feel confused?
Helplessness
You do what you can but ultimately you are at the mercy of your body. I make sure I get enough sleep, eat the right foods, take my medicine on time, and keep stress low. When my brother recently passed, I headed straight into a flare that cost me 5 pounds and lots of blood. I did what I could by resting and eating soft foods, even abstaining for awhile.
I let my body decide if I needed to call my doctor and on the 4th day I felt better, still grief stricken, but I was surprised to wake up one morning with the pain gone. I still have flares that come and go, but I am learning to accept them. You'd think by my age I'd have this figured out. Sometimes I feel like my body is betraying me but it is important not to look at it that way. Instead, I focus on remembering everything Crohn's has taught me. My compassion and sympathy have grown exponentially. Empathy abounds in me and I no longer judge other people. You never know what that person is going through until you walk a mile in their shoes.
Tomorrow, we will discuss anger. An emotion that deserves a blog all on its own.