“But…how will I know when I’m BETTER??!?!”
This is a question I was asked a few months ago by a friend who was recently diagnosed with that tricky beast known as Irritable Bowel Syndrome (IBS) and was going through various treatments with widely varying levels of success. While my initial reaction to the question was to shrug and reply “When you feel normal again?” I’ve actually been thinking about the question a lot. What does “better” or “normal” actually mean in terms of each individual’s personal perception of health? Is “normal” for each individual even a static state of being or is it a fluid state flux?
Perhaps I should back up a bit to put into context why my friend was even asking me the question. All of my life I have dealt with what has since (and only very recently) been diagnosed as IBS. What does that mean? Well quite simply for me, all growing up, “normal” was always feeling a bit crampy and wiggly in the stomach; especially after eating. It seemed no matter what I ate or didn’t there was always a constant pressure building in my digestive tract which warned me that staying more that a brief sprint from the nearest bathroom could prove… undesirable.
Anytime I ate I KNEW that within 20 minutes the stronger digestive gurgling would begin and the next few hours would be a touch-and-go game of bathroom tag. This was life. Riding on long trips became a matter of mind-over-matter as I tried to CONVINCE myself that I wasn’t in intestinal pain and didn’t REALLY have to use that next rest stop that was fast approaching. I learned to function this way. I knew no other way to live. 8-12 times a day my digestion would win over and send me running to the bathroom to play the doubled-over-in-pain game of …we’ll just say “ick”. I coped and figured that was just how everyone else must do it too. My parents thought I was obsessed with seeing the inside of any and every bathroom in the world but I just figured they must be teasing me about something everyone else had to deal with too.
If I was going to be on a long trip I learned to just not eat anything beforehand. If I didn’t know when I’d be near a bathroom again I would just avoid eating and deal with the low-grade constant pain I’d grown accustomed to instead of having to deal with those tougher bouts of sharp pain and urgent urges. Once I learned to drive I took a roll of toilet paper as a just in case. I learned to ease my stomach’s cramps with mental relaxation techniques to get through long journeys if I had to eat at some point (6-7 hour trips to college for example) and always chanted to myself as a calming reminder that if I HAD to I was always allowed to pull over to the side of the road as a last resort. Any hour WITHOUT that constant feeling of “blah” was enjoyed with the trepidation that comes from knowing it would not last. Menstrual cramps added to it made for 3 days of torture every month.
But, that was life. That WAS “normal” to me. It was only about a year ago, when things started to get even a bit worse, that I finally said “No. Enough! This is no longer how I want “normal” to feel. There has to be a better way.” I met and spoke with my amazing gastro-enterologist. Had some testing. And got what I call my little life-giving pills.
Once a day I take a pill that has stopped my stomach from doing its normal little cramp-dance-flip-flops of doom. No longer does every day pass in a low-thrum of intestinal pain accentuated by post-eating dire straights. The first week that I felt this freedom from pain and a drastic drop in such urgent runs to the bathroom it was like a whole new world opened up to me. As wonderful as putting on my first pair of glasses and SEEING those little spring twigs on the trees; I felt ALIVE! I wasn’t tied to a need for the bathroom for the first time. EVER.
I didn’t eyeball meals with a look ahead to whether I’d be within walking distance of a bathroom in the next 20 minutes. I could eat and then go shopping or take a hike in the woods or ANYTHING! Driving was not always a matter of mapping the route with the most bathrooms. And this wonderful feeling continues still today. I may have to take a pill each day to ensure it does but now that low-grade pain is NOT the norm for me. My definition of “normal”; my view of “better” is changed.
It is not always perfect, this new version of “normal”. Indeed there has been a long and continuous process of learning; a curve that will likely go on for quite some time; where I’m discovering foods to avoid that trigger those acute episodes reminiscent of my youth. I’m adding fiber pills to supplement my already pretty leafy meals and have had to stop chewing sugar-free gum (which, for someone with a chewing obsession has proved to be very difficult). Yet after praying at one point that there was SOMETHING to diagnose as “wrong” with me so that there was something tangible to FIX; these small actions are a drop in the bucket and well worth it to me.
So, at the end of all this I have to say that now I get through the rougher parts of my menstrual cycle (which are still shaky and “wiggly” for my digestion) and look forward with relief to feeling “normal” again; to feeling “better” once more. I’ve learned that feeling “better” is different to me now than it was before. Yet both versions of the feeling were/are what I, at the time, decided was “bearable”; “livable”.
So when my friend asked how she could know she was finally feeling “Better” (Is it when you get to a certain number of bathroom runs per day? Is it when you can eat certain food without getting those urgent cramps? How do you KNOW?!??!) I answered, “When you feel normal again?” And you know what? After all this rambling reflection I have to say that I’d stick with my answer. Feeling better isn’t measurable by the same metrics for each person. This is where we get into trouble in trying to define “healthy” or “normal” across entire populations. There IS no one single defining feeling of “normal” to experience.
Each and everyone of us will experience “normal” as our own personal definitions of the word. I truly believe that there IS no universal constant for “normal”. You can try to set up measurements of size or shape or the number of pills taken or how many weights you can lift in order to decide if someone is indeed “healthy” or “normal” or “better”. But at the end of the day, all that matters is that YOU are able to reflect upon how you feel and say “Yeah, I feel pretty much normal”. How that actually feels to you may not match how it feels for anyone else in the world and will likely be ever-changing as you age and move through life’s experiences.
No matter how you personally define it; I find that “normal” is an individual reality that reflects the bare minimum level of health (mental, physical, emotional) that you will put up with. And no ONE version of it is better than the other. So, how DO you know when you’re better?? It’s when you feel like YOU again.
June 15, 2009 at 1:33 pm
I think that “normal” or “better” is a state of mind. It may seem pessimistic but there will always be obstacles to overcome. We may conquer one thing only to find that another is laying in wait. I think that being better is being comfortable in your own skin and I think that you embody that.
June 15, 2009 at 2:15 pm
I’m having to re-adjust my feeling of what “normal” or “better” is. In my late 20’s, I started to develop weird wrist, ankle, and knee pains, but I ignored them thinking they were just results of overuse or whatever. When I moved to NY, I finally HAD to go to a doctor because not being able to walk much really hindered my ability to get around. Now that I’ve been diagnosed with rheumatoid arthritis, I’m having a hard time facing the fact that what used to be “normal” for me, before developing the disease and being in pain all the time, will never be “normal” for me again. I’ll always be prone to fatigue, have days where I just hurt more than others, and will always have the new, limited range of motion in the joints that were most severely affected before I got medication.
Readjusting from a position where you feel bad all the time to one where you’re not is awesome. Going the other way kind of sucks, and it’s hard to deal with.
June 15, 2009 at 3:06 pm
Shell I completely agree about going “the other way” and meant to address that point too. I think my mind worked a lot faster than my fingers here. It is really hard for everyone to deal with the many ways that aging works to change our perspectives on “normal”; especially since what it tends to do is make things more difficult or at least not as easy as they perhaps used to be.
June 15, 2009 at 4:04 pm
It’s been really weird for me, though, adjusting first to pre-medicated “normal” (stiffness, pain, hard to get going in the morning) to post-medicated “normal,” which while it isn’t pre-RA “normal” is MUCH better than pre-medicated “normal.” It’s like a wild roller-coaster ride! It is nice, though… I thought I’d never be able to belly dance again, and I’ve started taking classes again, and getting around in NY is a cinch now, so things are definitely improving. I just have to keep myself aware that it won’t ever be like pre-RA normal, so I don’t push myself too hard.
June 15, 2009 at 3:04 pm
I understand your struggle all too well. I’ve had bouts with IBS all my life. I had gastric pypass surgery 5 years ago, and the struggle with my intestines continues. I didn’t think that my surgery or losing weight would change the IBS issue and it didn’t, at least not for me. The foods that hurt me have turned out to be foods that I don’t really need to be eating anyway, for the most part. Milk was never my friend, and is now mostly my enemy. But life goes on, and whatever normal is for me, is surely going to be abnormal for someone else. When anyone figures out normal, please let me know. I’m trying to figure THAT ONE out in mutiple areas of my life.
June 15, 2009 at 4:35 pm
Hi April,
I have also been diagnosed with IBS, and I was wondering if you would be willing to tell me what medication you were prescribed? You can email me privately if you don’t want to say in comments! (Or not tell me at all if it’s too personal.)
Thanks!
June 15, 2009 at 8:53 pm
This is a really good, thought provoking post. What is “Better” or “Normal.” I’m such a cheerful, hyperactive person that “A bit down” for me is normal for someone else.
June 16, 2009 at 9:56 am
What are those pills?! I need me some! I had IBS before I had my gall bladder out but since then, well it has been ten times worse. Your story sounds a lot like mine. So yeah, what are those pills?!
June 17, 2009 at 12:47 pm
For those who have asked I am taking Noritriptylene (generic version) for the stomach over-sensitive cramping/rumblings. I also have dicyclomine for any occasion when I eat a food that I know is about to make me worse off (for example I know that anything greasy will do me in so I usually avoid it. If I do eat something greasy I will take a dicyclomine but really don’t use them much because I’d just rather NOT have the chance of feeling awful!). Both were used in much higher doses for depression a while back. (I may have spelled them a bit wrong) These are in addition to greatly increase my fiber with fiber tablets, stopping all chewing of sugar-free gum and even then I still have days that are rough; but it is MUCH better. Obviously YMMV greatly since all bodies are different. Hope that helps!
June 16, 2009 at 10:42 pm
I had that exact experience with depression. I’ve dealt with it all my life and it wasn’t until I was a year or two ago that I realized that most people weren’t constantly judging if their life was better than being dead, and even people with lives much worse than mine didn’t long for death the way I did.
June 20, 2009 at 9:58 am
As always, April, you rock and make me think. I am constantly astounded to learn that not everybody thinks the way I do. I never knew I was strange. (Well I knew I was strange. I just didn’t realize that, like a Mac, I “think different.”) I am also continually shocked at how abnormal my loving, “normal” family is. My husband thinks we have to be unhealthy to have such a good relationship. (And I’M the cynic in the family.)
We’re so used to watching the world from behind our eyes, through the lenses of our own experiences. It comes as a shock to realize that other people can be looking at the same exact scenario and see something completely different. And yet, when I’m judging myself, I’m trying to see the situation, my world, from the eyes of someone else. And I judge myself all the time and harshly, because I think that’s how other people are thinking.
I try to remind myself that nobody else actually cares all that much. Nobody else watches me that closely, or thinks about me that often. People are way more self-centered than I give them credit for. By this point, unfortunately, the critic has been internalized and is a knee-jerk reaction. Way to go society for your indoctrination! I’m finally starting to get to the point where I can realize that the critic isn’t necessarily right and start arguing with myself. It’s supposed to help to identify the type of irrational thinking that you’re using while it’s happening and write it down. I suppose if I spend all of my time writing in a notebook and neglecting things like work, eating, taking care of my family and house etc I might be able to do that. For the time being, I’ll just read your blog and write long, rambling responses to help keep the faith that I’ll eventually get around to getting better mentally.