A few months back I wrote a small diary about my life, and dealing with Corhn's disease. I was asked by a few people here on DailyKOS as well as on my blog to write about what a day in my life is like. It took a little time, this is something that is hard to write about. I found it even harder when detailing my personal life, and what I go through every day. After many weeks, here is a day in my life.
At the bottom you can find a link to my first diary, and a link to my blog, which has a lot of helpful info about IBD's.
Crohn's disease is a disease that causes inflammation, or swelling, and irritation of any part of the digestive tract also called the gastrointestinal (GI) tract. The part most commonly affected is the end part of the small intestine, called the ileum.
In Crohn's disease, inflammation extends deep into the lining of the affected part of the GI tract. Swelling can cause pain and can make the intestine also called the bowel empty frequently, resulting in diarrhea. Chronic or long-lasting inflammation may produce scar tissue that builds up inside the intestine to create a stricture. A stricture is a narrowed passageway that can slow the movement of food through the intestine, causing pain or cramps. Due to this many patients with Crohn's disease suffer from rapid weight loss.
My days starts off some where between 3 am and 6 am. Somewhere in there, while I am sleeping the inflammation begins, and then the swelling of my gut, and then the pain (my gut literally feels like it is on fire from the inside). The pain is what wakes me up, wakes me up out of a dead sleep. There is no lingering in my bed in the mornings, no groggy eyed, slow wake up, reveling in the sweet spot of my bed.
No, I wake up every morning a bit startled, like someone had scared me, with anxiety, and pain. I cannot lay in my bed, next to my husband and seek comfort. The nausea is that bad that laying horizontally makes me even more ill. The mornings are when my Corhn's disease starts to rage, and is at its worst, all color is lost from my face, I am so nauseous that I gag, sometimes I vomit, my body cannot control its own temperature, I freeze in 90 degrees sometimes, and wear sweatshirts, or I get ridiculously hot when it is 30 degrees out, and I am running around in a tank top and shorts, the feel of cloth on my body can drive me insane, and it can take me hours to get my body under control.
I spend my mornings one of two ways....
I sit in front of my computer, read the news, maybe play some solitaire, medicating myself the whole time, in an attempt to make it all stop, or at least make it feel like it has stopped.
Or, if it is really bad, and no medications are working, I go for a drive. I know this sounds strange, but something about the vibrations, the feel of the car, something about it helps....
The next step of my day, breakfast.
Most of us have eggs, toast, bacon etc, for breakfast. Or oatmeal, or cold cereal.
This is to much for me, on any day.
My breakfast consists of, a cup of tea, with a touch of milk.
Now I have to get ready for work. That is a task in and of itself. This is because I work in a bakery, so anywhere from 5 am - 10 am is when I need to show up for work. Depending on what they have me scheduled for that day, and I am almost always there till 7 pm when the bakery closes.. This means that there are days where I have to show up to work with my Crohn's disease still raging.
This is such a battle, I work nauseous, in pain, and the anxiety knocking at the door. I do not work at a job where I can sit and rest. I have to bake breads, cookies, muffins, pastries, fry donuts, and frost all of the stuff that needs frosting. Then I have to bag it, tag it, and put it on display. After that... I have to move boxes full of frozen baking goods/items around, and pull what is needed for the next day, as well as make the fresh dough for the next day. I do all this running around while being physically ill and in incredible amounts of pain.
Sometimes, the pain, the nausea, the swelling stops, and I get a reprieve for a time. It comes and goes in waves, some small, others huge, like waves crashing against a rocky coast. Most days, I feel like I want to die in the morning, by almost the afternoon, I feel semi normal. But then the question becomes how long? How long do I get to feel normal for? A few hours, maybe a day, sometimes 2, that's about as much of a reprieve that I get from my disease. And those 2 day spurts of normalcy are few and far between. My bits of normalcy are just that, bits, most of the time only lasting a few hours.
Once I have baked off the items that I need to, bagged them, tagged them, put them out on display, and panned up (pulled out) all of the dough and goods for the next day's bake, I get to clean and sweep and mop my giant bakery, and then I can go home. All that work usually sets my Corhn's disease off, all the moving, running around, bending over, and lifting get to me, and by the time I get home my body is out of control.
I almost never eat lunch, and only sometimes do I eat dinner. This is mostly out of a fear that my inflammation and pain will flair up, and I would rather spend my work day just battling what is always there, then make it worse, and I do have to fight my body every minute of every hour of every day, just to be able to function. Most evenings I get home from work and medicate myself. It can take an hour or two before I feel better, and at some point in there I make my husband dinner. Sometimes he eats dinner by himself, other times he will eat first because it can be another hour or two before I am able to eat anything.
Usually by 10:30 or 11:00 pm my body is finally calm enough for me to lay down and attempt to sleep. Just for me to wake up and start the cycle over again.
My first diary
http://www.dailykos.com/...
My blog
http://cdmymm.blogspot.com/