March 18, 2011

Things I've learned from being chronically ill

I've decided that I just need to come to terms with the fact that I have a chronic disease, one for which the experts say there is no cure.  For years I've tried to ignore it, pretend it isn't there.  But it keeps rearing its ugly head and letting me know that it is, in fact, a part of my life and that it will, in fact, affect me in various ways at various times.

I have what is called ulcerative colitis and without going into much detail my colon looks like a knee with road rash.  Sometimes I am in remission and my body functions like normal.  Other times I have flare-ups and then I have to use the bathroom constantly, 3 to 5 times an hour.  I also have horrible stomach cramps/spasms which leave me curled up in a ball, usually crying.  Often I can't eat because of the nausea.  This last bout left me throwing up hourly and I ended up in the hospital needing IV fluids and some pretty serious pain meds.

But this post isn't about my actual health condition, it's about what I've learned, and am learning, along the way.  And many of these lessons can be applied to any illness whether it be chronic or a 3-day cold.  They could also be applied to life in general, because you never know what will happen!

1.  It does no good to lay in bed and cry all day about the unfairness of your condition.  Or to scream "WHY ME?" into the universe.  The fact is, it is your lot to carry.  And if you put things into perspective, it could be a lot worse.  I would much rather carry the burden of my disease than cancer.  Or AIDS.  Or any number of diseases.  Or to be going through what the Japanese or Libyan people are dealing with.  It's taken me a long time to reach this place, this place of accepting what I've been given and then trying to learn from it.  What lessons does the Lord want me to learn?  Not why do I have it, but what can I learn from it?  How can I grow from it?

2.  Turn to the Lord for comfort.  He knows all pain, all despair, all fear.  He understands how to relieve the pain, how to lift you up when you feel like you can't go on.  He can give you the strength to get out of bed and make breakfast for your children.  He can calm your fears and guide you as you make choices about what you eat and how to use the energy you have.

3.  Take care of your spiritual health.  The times that I've let this go are the times I most despair, the times I feel like a failure as a wife and a mother, when all I can see around me is what I am NOT doing.  By reading my scriptures first and praying every day I can often find a way past the pain and fatigue to get things done.  And I find the patience and grace to deal with my children in a calm manner.  Without that spiritual foundation I find myself getting snappy with them and focus more on my pain, my discomfort, my 'heroic' efforts to school them or cook for them and I forget that it is only through the grace of God that I'm able to do those things.  And I forget what a joy and blessing it is to have such wonderful children.

4.  Take care of your physical health.  Sometimes I feel like there isn't much I can do about this.  But there is.  I can exercise.  I can eat as healthy as I know how to.  I can research diets and treatments and supplements and voodoo magic to see if there is something that mainstream medicine doesn't know about my condition.  I can sleep.

5.  Train your children while they are young and when you are healthy.  It has been such a blessing during the last week or so that I've been sick to have 2 10-year old boys that can make breakfast and lunch.  One day I casually mentioned that we might need to take some time to clean later in the day and one of my sons cleaned the entire house, by himself.  They all know how to clean, including the bathrooms, to cook simple meals and to help with the laundry.  I did notice some gaps in what they can do so once I'm fully back on my feet we'll be working on those.  It was so wonderful to see the looks of pride and confidence on their faces as they were able to truly help the family in a time of need.  They were contributing, even running the home, and they felt that satisfaction of serving others.

6.  I'm learning to use my healthy time to the best of my ability.  We get out in nature with the kids as often as possible during those times.  You can't really go hiking when you have massive diarrhea.  I'm just saying.  The healthy times are when we work most on habit training and fun family times.  We get extra schooling done and clean out closets, organize and dejunk.  It's both a time for work and a time for play.

7.  Sometimes you just have to say no.  Sometimes I can't go out with friends.  Sometimes I can't be in charge of a big project at church.  Sometimes I can.  It's hard for me to talk about my illness with others, mainly because it involves talking about the bathroom and nobody really wants to talk about that.  But I'm learning that sometimes I have to let them know that it's not that I don't want to spend time with them or help them, but that I physically can't take on more right then.  Other times I can, and then I do.

8.  Have cooked food, or easy to cook food, in the freezer.  I should know this because I've had crazy pregnancies requiring bed rest, but I'm still not good at it.  As soon as I get sick, like in bed can't move from the pain sick, my husband takes over cooking dinner (with the boys doing breakfast and lunch).  Most of the time husband-dinner involves take-out - pizza, burgers, etc.  Expensive and not healthy, especially when your guts are super sore.  If I had been prepared we could have been pulling things out of the freezer that were wholesome and inexpensive.  He's actually going to take some time off of work next week to help me do some freezer cooking (and clean out the closets and such).  Bless his heart.  I'm also trying to work on pantry cooking - having easy meals that can be made from canned or boxed foods.  Wait, that doesn't sound healthy does it?  I guess I'm thinking more like the "basic" cans and boxes - what can be made with a few cans of beans or pasta?  Or flour and some eggs and milk?  Stuff like that.  We're also going to be preparing a list of super easy meals that husband or boys can make with fridge or pantry items that might not be good to freeze, like quesadillas or egg salad sandwiches.  Sometimes you forget that there are simple things to make in time of sickness because they aren't part of your regular menu plan.

Having food in my freezer also means I can give service even when I am sick.  If there is a need to bring meals to a new mother or a sick family, I can easily pull it out of my own freezer for them.  Serving while I am sick is such a blessing.

9.  Have a system or schedule in place so that the house and life can keep functioning.  Sometimes my brain is only working at 1/4 power and it helps to know what comes next or what I'm supposed to cook for meals.  If I'm completely out of commission, then the kids and husbands know what to do next and can keep things moving forward.

10.  Give yourself permission to not be Super Homeschooler.  I am the Queen at Kicking Myself for what we didn't get done that day.  For seeing all the undones.  I have a brilliant husband though who is very, very good at finding what I did do that day.  Maybe we didn't get 2 math lessons done, or read 50 pages of history and 35 of science and work on dissertations in quantum physics or solve world hunger.  But maybe we played games all day, read books together, watched some scripture or Popular Mechanics videos, maybe they played outside all day while I sat in a chair watching and reading a book.  Maybe they just 'socialized' with each other.  In the grand scheme of things, it's okay to have a day off, or six.

11.  Plan ahead when going out.  Maybe this applies more to my specific problem, but I know where the bathrooms are in every store.  At first I needed to know this when I had babies in diapers or potty-trainers who couldn't hold it for long.  Now I need it for me.  If we're going to a store I don't know well, I find the bathroom first.  I've also trained my kids on what to do if mom has to dash into the bathroom.  Being that I have 4 boys, they typically don't come in with me.  I also make sure I have snacks in my purse because sometimes I can't eat for long periods of time due to pain or nausea, but then my blood sugar drops quickly and I need something to pick me up fast.  Larabars work well for this.  Although I want to figure out how to make my own.  If we're going to be driving for a while I plan bathroom breaks and meal times.  Usually I won't eat for several hours before we leave so there is nothing in my system that needs to come out.  Pleasant, I know, but it's the reality of my life.

12.  Learn to laugh about life.  If I couldn't find the humor in my situation or life in general I would truly be miserable.  When I'm talking with doctors about the very nitty-gritty specifics of what is happening I try to have fun with it.  My current GI taught me this.  When I first saw him I was all embarrassed to be discussing such gross and personal things and I stopped and said, "I hate talking about poop."  In his huge Texan drawl he yelled, "I LOVE IT!!!"  In the ER Wednesday the doctor asked if I had any other chronic problems, I looked him right in the eye, and said through clenched teeth, "No.  I think this one is enough."  His mouth dropped open a bit and he moved on, shaking his head.  I'm working on finding ways to laugh about this....I also find that it helps my kids feel more comfortable with the problem.  If we can say something funny about mom having to sprint off to the bathroom then it's not "a disease" to worry about, it's just silly mom.  And for the record, I'm not crude about poop humor.  My jokes are not about's more about life in general and the challenges that sometimes happen.  And laughing makes you feel happier and healthier if it's good laughter so that's what we aim for.

13.  I feel a greater importance in telling people how I feel about them, in making sure that my husband and children hear how much I love them and how grateful I am for them.  I also make sure that my children know of my faith and my love of the Lord.  I try every day to write in a journal for them, telling them what we did that day, any funny comments they made, to document their kind deeds and to express my testimony of the gospel to them.  Someday I hope it will be a joy and comfort to them to have their life's deeds recorded and to hear my counsel and advice as they get older.  I don't think this disease will kill me, but if it does I want to leave a legacy of wisdom and love for them, through my daily actions and my written journal.

14.  I value simplicity more.  I want meals that can be prepared in 30 minutes or less.  I don't want to spend 2 or 3 hours a day cleaning my home.  We have dejunked and dejunked and dejunked and organized and organized and organized.  And we are going to do it again.  It makes it easier for us to maintain together, and easier for the kids if they need to pick up the slack for a while.  Even my 4-year-old can completely clean most rooms now.  Every little bit helps!  Life it too short, and healthy time too precious, to be spent dealing with stuff.

15.  Stock your pantry and toiletries while you are healthy and when they're on sale, if possible.  It's much easier for me to stock up every time I shop and then send my husband to the store for a few items, than it is to send him with a massively long list.  I also take my husband and boys shopping with me on occasion so I can to teach them how to pick out good produce, what brands I prefer to use and where to find certain things (like the taco shells are near the bread, not the Mexican aisle).  

And now I'm going to take some of my advice and go spend time with my kids.  And cook a big pot of soup to eat for dinner and freeze half for another meal.  I might even get some laundry done.

Enjoy the life you have.  It is a gift and a blessing.


  1. Thank you for sharing the positive things you have learned! I am learning about the Gut and Psychology Diet that's all about healing the gut. Perhaps it could help you. I also recommend
    Good luck!

  2. What a miserable thing to have to go through! I'm glad you can still see some of the positive. Keeping you in my prayers.

  3. What a fantastic post. We're on the upside after 4 years of chronic debilitating illness. We know most of the reasons I got better but there is still a lot of care taken to make sure it doesn't happen again. Your tips are spot on and really do help.

    Ok one tip though, It is a homeopathic medicine called Pleo Oku and it is a life saver. I have celiac and get horrible stomach spasms that have me on the floor drooling in pain for a few minutes and this helps with that. It stops diahrea in 10 minutes flat. It burns when you put it in your mouth b/c of the alcohol content but I couldn't live without this. And the $30 bottle lasts for months even with heavy use. There is another one that I can look up if you're interested that I use for nausea. I was on phenagren for months and it didn't do much but make me high. This stuff made me able to function.

  4. That is a tough one! I am so glad that you are finding many silver linings.
    Have you considered (I'm sure you have, but thought I'd ask on the off-chance) a gluten free and possibly dairy free diet? Have you been tested for celiacs, allergies and intolerances?
    My daughter has Non Celiacs Gluten Intolerance and also cannot have dairy or eggs. Her symptoms are very similar to yours and also bedwetting and my research with that, I've discovered many with other chronic digestive issues find relief with getting off gluten or other foods that they are intolerant to...just an idea.
    My daughter is doing so well now (4 yrs later).
    Your boys sound like wonderful sons!

  5. ugh! My friend has that. My profound sympathies. My calling sometimes feels like a chronic illness, so reading that really helped :) Thank you!

  6. Have you read "The Makers Diet" by Jordan S Rubin ? Maybe this book would help you.

  7. Wonderful post, even those of us who don't suffer from cronic conditions like you (so sorry!) can learn from every single point. Thanks for sharing.

  8. Eat to Live by Joel Fuhrman MD. I had that's right I said I had a similar condition that is now gone. Gone. GONE. I am up instead of in bed 20 hours a day. I am getting my house back in order. I am happy and yes, I am cured. So can you. He is a real MD with thousands of patient success stories and plenty of research to back up his Word of Wisdom claims. And he does phone visits.

    It's nice to learn to live with it and be patient but a lot nicer to get better.