A Day In the Life of An IC (Interstitial Cystitis) Patient
I get a lot of questions about interstitial cystitis. I get them from people who are curious about the condition, people who know someone with it and people who have recently been diagnosed with it. I get them from people who think they may have it. Some people may wonder why on earth someone would post such personal things about this medical condition. It's not so people will feel sorry for me or think of me as a "sick" person. And it's definitely not to make people feel uncomfortable. It's to create an awareness about the condition and help people who do have it to know they are not alone, but also to help people who may have it but they haven't been diagnosed yet. It seems really weird, but after six years talking about my bladder to people it doesn't embarrass me or make me feel like an old woman. It is just part of my story. And this is the story (or at least one day of it), that I am sharing with you.
My day usually starts somewhere after 12:00 am. Sometimes earlier than that, but usually around that time. I get that pressure. Do I have to go to the bathroom? Usually at this time of night, I am not really sure if I do or not (and usually too tired to care). You see, I always feel like I have to go to the bathroom. I always have pressure that is constantly there, so usually I don't really have a clue. It is not just the pressure I feel though...there is also burning. My bladder (and other areas) feel like they are on fire and sometimes like they are being stabbed with a thousand knives. Ouch. At this point I just get up and hope that I really do need to go. Sometimes I am relieved that I did go because I really did need to go, but sometimes I didn't and realize that I wasted precious sleep time (and toilet paper!)
Most nights I only go once a night. I realize for most IC patients this would be a great victory (some IC patients void upwards of 50-60 times a day.) The nights I do go more than once I usually feel worse the next day.
When my "alarm" wakes me up, in the form of a 20 month old little girl, Alexandria, I get up. Because I can't afford one of the main medications that actually helped me control my IC, I do not have any medication to take, except my over the counter allergy medicine (which does seem to help my flare ups as I do tend to get them when the seasons change in fall and the spring). Most mornings my stomach is upset and I feel nauseous, which I have identified is a result of my bladder pain. I reluctantly get up and greet my baby girl (but not before I make another trip to the bathroom). If she got up before Dada left, she is usually eating crackers, if not I get her a banana and prepare some oatmeal for myself. If it is a bad morning, this is about all I can do before I sit down on the couch to let my stomach and bladder calm down.
Most mornings I try to plan a play date or any outing to keep my very social child entertained. If we don't get out of the house, she constantly asks me, "Go bye bye?" One of our favorite outings is to story time at the library. The librarian reads the kids several books and they sing songs and then they bring out toys so the kids can play. If you've seen me at these outings I tend to be the one sitting. Or I will stand for a little bit and then go grab a chair because my bladder hurts and I can't stand for very long. I love my play dates though. The social activity helps distract me from the pain I'm feeling and lifts my spirits so that I don't get depressed when I am alone. I also love identifying with other moms and their day to day parenting struggles. I am forever grateful for the mom friends that God has placed in my life for these reasons.
After the play date we head home and I fix lunch for the both of us (after going to the bathroom). You won't see many boxed or prepacked foods in my cabinet. IC patients are sensitive to so many different foods (especially tomatoes, spicy foods, chocolate and coffee) and if we want to control our IC (and not end up in the ER), we have to keep a very strict diet. This is the only way I can function normally without being on medication. For this reason lunch preparations take some time if there aren't any leftovers from the night before. Everything has to be hand chopped and hand made. Which isn't necessarily a bad thing because it is more healthy that way.
My baby girl and I usually watch Rachael Ray while we are eating lunch. It's my "relax" time before she goes to take her afternoon nap. My favorite part of the show is when she cooks. While I watch the show my stomach usually growls (even though I am already eating) and my mouth waters. The food she makes looks so delicious. Most people would be able to go straight to her website to download the recipes and prepare them as instructed. I can only dream. I can't stop myself from saying, "I can't have that, I can't have that, I can't have that." Or, "Why doesn't she make this with this cheese? Or this meat?" I just content myself by watching her make and eat all of that yummy food.
After Alexandria goes to take a nap I usually try and work on one of my projects, whether it is sending out Neighborhood Watch communications, organizing something for our CREATE art team at church, or working on editing my book. If it is a day like today (zoo day!) I did a lot of walking and I have a lot of pain and bladder cramping. Usually about halfway through my "work" I am exhausted. I have already went to the bathroom a few times since I got home from the play date and there is a burning and cramp like pain in my abdomen. So, despite the fact that it makes me feel extremely lazy, I take an afternoon nap. On some days this is all I get done.
Most days, after we nap, we get up and I just cuddle with my girl. She is extremely crabby when she gets up and demands my full attention. Sometimes I will carry her as I prepare dinner. Depending on how the day has gone, the pain I feel may be great. On those days it is hard for me to stand up to make dinner. It takes all of the energy I have. Then I sit down and baby girl and I cuddle some more.
Certain days of the week when my husband gets home we load the car up so I can go swim laps. It is one of the few exercises that I have found that actually does not seem to bother my IC. In fact, now that I think about it, I don't really think about my pain while I am swimming, so in a sense it isn't there. It is also great for me spiritually as I usually use the pool as my own personal prayer closet. Physically and spiritually it helps me feel like a new person. I force myself even if my IC isn't feeling well. I know once I get in the water I will feel like a "whole" person again.
At this point, we usually listen to baby girl fuss on the way home. She is usually hungry (which we have tried to feed her snacks, but sometimes she won't take them). I feel a little bit bad about it, but as a good friend once told me, sometimes in parenting you have to be selfish. To be a better parent I have to go on these swimming excursions for all of the reasons I posted in the previous paragraph and so that I can be a better mom.
Once we get home (accompanied by another bathroom trip), we eat dinner. I am grateful that I get to give Alexandria a bath, because I get to sit down. I get her dressed and we read her stories and kiss her "nigh, nigh" before she goes to bed.
After baby girl is in bed my husband usually works on homework and I get an IC friendly snack and head to my bedroom to catch up on some shows on-line, exhausted. On days like today the bladder pressure isn't relieved and is actually the worst I have felt all day. My bed time routine includes watching my face, flossing and brushing and using my Neti-bottle. I take an assortment of natural supplements (iron, folic acid, calcium) since I cannot take regular vitamins. I also have to take an over the counter sleeping pill, to help me to sleep through the night, as well as a low dose anti-depressant, which most IC patients take to help relax the bladder muscles as well as help them when they are feeling depressed about the chronic pain they face. I usually go to the bathroom again and then read for a little bit. Then I make my last trip of the night to the bathroom. When I finally lie down all I can feel is the pain I have been trying to avoid all day, but have come to be familiar with.
And then a couple of hours later I wake up in the middle of the night with that pressure and my day starts all over again.
Living with this pain has become normalcy to me. I realize that my pain isn't worse that most, but I do know it is my pain and it is very real. It inconveniences me in the most absurd ways and it affects decisions I have to make about my life (how much I travel, what types of restaurants I go to, and what types of activities I partake in, ect.). But that's all it is, an inconvenience. It does not define who I am. I refuse to let it. It does not make me less of a woman or of a human. If I smile, sometimes it is in spite of the pain, but I am genuinely happy. I have learned to smile in spite of the pain. Some days that is all that keeps me going. Some days I just laugh in it's face (I have been known to be pretty stubborn). I am not my disease. My disease is just so lucky to be a part of me. Because I am that awesome.
My day usually starts somewhere after 12:00 am. Sometimes earlier than that, but usually around that time. I get that pressure. Do I have to go to the bathroom? Usually at this time of night, I am not really sure if I do or not (and usually too tired to care). You see, I always feel like I have to go to the bathroom. I always have pressure that is constantly there, so usually I don't really have a clue. It is not just the pressure I feel though...there is also burning. My bladder (and other areas) feel like they are on fire and sometimes like they are being stabbed with a thousand knives. Ouch. At this point I just get up and hope that I really do need to go. Sometimes I am relieved that I did go because I really did need to go, but sometimes I didn't and realize that I wasted precious sleep time (and toilet paper!)
Most nights I only go once a night. I realize for most IC patients this would be a great victory (some IC patients void upwards of 50-60 times a day.) The nights I do go more than once I usually feel worse the next day.
When my "alarm" wakes me up, in the form of a 20 month old little girl, Alexandria, I get up. Because I can't afford one of the main medications that actually helped me control my IC, I do not have any medication to take, except my over the counter allergy medicine (which does seem to help my flare ups as I do tend to get them when the seasons change in fall and the spring). Most mornings my stomach is upset and I feel nauseous, which I have identified is a result of my bladder pain. I reluctantly get up and greet my baby girl (but not before I make another trip to the bathroom). If she got up before Dada left, she is usually eating crackers, if not I get her a banana and prepare some oatmeal for myself. If it is a bad morning, this is about all I can do before I sit down on the couch to let my stomach and bladder calm down.
Most mornings I try to plan a play date or any outing to keep my very social child entertained. If we don't get out of the house, she constantly asks me, "Go bye bye?" One of our favorite outings is to story time at the library. The librarian reads the kids several books and they sing songs and then they bring out toys so the kids can play. If you've seen me at these outings I tend to be the one sitting. Or I will stand for a little bit and then go grab a chair because my bladder hurts and I can't stand for very long. I love my play dates though. The social activity helps distract me from the pain I'm feeling and lifts my spirits so that I don't get depressed when I am alone. I also love identifying with other moms and their day to day parenting struggles. I am forever grateful for the mom friends that God has placed in my life for these reasons.
After the play date we head home and I fix lunch for the both of us (after going to the bathroom). You won't see many boxed or prepacked foods in my cabinet. IC patients are sensitive to so many different foods (especially tomatoes, spicy foods, chocolate and coffee) and if we want to control our IC (and not end up in the ER), we have to keep a very strict diet. This is the only way I can function normally without being on medication. For this reason lunch preparations take some time if there aren't any leftovers from the night before. Everything has to be hand chopped and hand made. Which isn't necessarily a bad thing because it is more healthy that way.
My baby girl and I usually watch Rachael Ray while we are eating lunch. It's my "relax" time before she goes to take her afternoon nap. My favorite part of the show is when she cooks. While I watch the show my stomach usually growls (even though I am already eating) and my mouth waters. The food she makes looks so delicious. Most people would be able to go straight to her website to download the recipes and prepare them as instructed. I can only dream. I can't stop myself from saying, "I can't have that, I can't have that, I can't have that." Or, "Why doesn't she make this with this cheese? Or this meat?" I just content myself by watching her make and eat all of that yummy food.
After Alexandria goes to take a nap I usually try and work on one of my projects, whether it is sending out Neighborhood Watch communications, organizing something for our CREATE art team at church, or working on editing my book. If it is a day like today (zoo day!) I did a lot of walking and I have a lot of pain and bladder cramping. Usually about halfway through my "work" I am exhausted. I have already went to the bathroom a few times since I got home from the play date and there is a burning and cramp like pain in my abdomen. So, despite the fact that it makes me feel extremely lazy, I take an afternoon nap. On some days this is all I get done.
Most days, after we nap, we get up and I just cuddle with my girl. She is extremely crabby when she gets up and demands my full attention. Sometimes I will carry her as I prepare dinner. Depending on how the day has gone, the pain I feel may be great. On those days it is hard for me to stand up to make dinner. It takes all of the energy I have. Then I sit down and baby girl and I cuddle some more.
Certain days of the week when my husband gets home we load the car up so I can go swim laps. It is one of the few exercises that I have found that actually does not seem to bother my IC. In fact, now that I think about it, I don't really think about my pain while I am swimming, so in a sense it isn't there. It is also great for me spiritually as I usually use the pool as my own personal prayer closet. Physically and spiritually it helps me feel like a new person. I force myself even if my IC isn't feeling well. I know once I get in the water I will feel like a "whole" person again.
At this point, we usually listen to baby girl fuss on the way home. She is usually hungry (which we have tried to feed her snacks, but sometimes she won't take them). I feel a little bit bad about it, but as a good friend once told me, sometimes in parenting you have to be selfish. To be a better parent I have to go on these swimming excursions for all of the reasons I posted in the previous paragraph and so that I can be a better mom.
Once we get home (accompanied by another bathroom trip), we eat dinner. I am grateful that I get to give Alexandria a bath, because I get to sit down. I get her dressed and we read her stories and kiss her "nigh, nigh" before she goes to bed.
After baby girl is in bed my husband usually works on homework and I get an IC friendly snack and head to my bedroom to catch up on some shows on-line, exhausted. On days like today the bladder pressure isn't relieved and is actually the worst I have felt all day. My bed time routine includes watching my face, flossing and brushing and using my Neti-bottle. I take an assortment of natural supplements (iron, folic acid, calcium) since I cannot take regular vitamins. I also have to take an over the counter sleeping pill, to help me to sleep through the night, as well as a low dose anti-depressant, which most IC patients take to help relax the bladder muscles as well as help them when they are feeling depressed about the chronic pain they face. I usually go to the bathroom again and then read for a little bit. Then I make my last trip of the night to the bathroom. When I finally lie down all I can feel is the pain I have been trying to avoid all day, but have come to be familiar with.
And then a couple of hours later I wake up in the middle of the night with that pressure and my day starts all over again.
Living with this pain has become normalcy to me. I realize that my pain isn't worse that most, but I do know it is my pain and it is very real. It inconveniences me in the most absurd ways and it affects decisions I have to make about my life (how much I travel, what types of restaurants I go to, and what types of activities I partake in, ect.). But that's all it is, an inconvenience. It does not define who I am. I refuse to let it. It does not make me less of a woman or of a human. If I smile, sometimes it is in spite of the pain, but I am genuinely happy. I have learned to smile in spite of the pain. Some days that is all that keeps me going. Some days I just laugh in it's face (I have been known to be pretty stubborn). I am not my disease. My disease is just so lucky to be a part of me. Because I am that awesome.
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ReplyDeleteI have never heard of this before - thanks for sharing your day. I have friends with other chronic conditions, and I understand the strength it takes to not let it define who you are.
ReplyDelete