Saturday, August 18, 2012
This Too Shall Pass...
It's absolutely amazingly mind-boggling the difference one day, or even half a day, can make in regards to health. For 4 consective days, I walked for 45 minutes or more. This has to be a record for me for consistent walking especially considering that on the 4th day, within 10 minutes my abdominal muscles felt overworked and strained as if I had tried to do a sit up or push up and half way through the walk my leg felt as though it was falling off by the knee. I am limited in my exercise as I can't strain my abdominal muscles without pain and feeling as though my incision (although healed for 10 years) is going to rip open, physical activity stimulates my SBS, I'm not supposed to lift more than about 20 pounds, and my knees feel arthritic. So exercise is a hard deal for me and this day it was showing.
The evening only worsened from there. My SBS hadn't been normal that day, it was rather absent which causes other problems and my body decided to rectify this until the next morning. I was up running for the restroom every 10 minutes, I couldn't try to prolong or I'd end up in a mess of myself. The evening's flare up left my skin inflamed and raw, and as my doctor has described my skin and my intestine: "it looks like raw hamburger". Lovely image huh? To this day I picture my skin and my insides tearing like raw hamburger!
I've discovered though when flare ups occur during the night, I can intervene and start to slow the process by lying with two pillows stacked upon each other under my thighs. I suppose it makes it less of a straight shot thereby forcing a slower progression. After a few hours into the night, I finally was able to sleep and the next morning I felt great. All within less of a 24 hour day. Exhausting!
My husband is very attentive to me when I'm feeling ill and he's become accustomed to this roller coaster of symptoms and unexpected starts and stops.
It's difficult for us to adjust to such unpredictability, particularly when we are new to such health issues and I think it can even be harder in some ways for those around us. Others feel helpless, not understanding what is happening and not knowing how to help us. At least we have more of the medical knowledge after years of our bodies being violated by health symptoms, medical tests and surgeries and we become to know what to expect with a flare up. All my husband sees is a woman reduced to tears at times, clutching her stomach, not able to walk or even stand straight up for long, running to the restroom every few minutes. He can only understand what I tell him about my symptoms or what I'm experiencing, the rest is left to his imagination. And all he wants to do is help me get off the roller coaster.
Eventually the roller coaster takes a break and we're left to enjoy some time and our lives again.
From experience, I know that the ride doesn't always seem to have an end in sight and a spiral of pain and despair is easy to begin. And quite honestly, during such trying times, I find phrases such as "this too shall pass", "nothing lasts forever", "this is only a moment in time" extremely vexing and almost insensitive to what is being experienced. It's hard to look for the light at the end of the tunnel when health issues are prolonged for years without much relief and we begin to worry it will never change. In these moments of despair, someone telling me that it'll get better, is offensive and even patronizing because it wasn't getting better and I felt no hope for it to ever get better.
Since those times, I have learned some valuable lessons though. Perhaps it isn't about reminding ourselves that "this too shall pass" but instead reminding ourselves that while we serve our painful time that there are precautionary health steps that we can take that although may not make us better, will help us so that we are not worse.
For example, during my 2nd period of torture, when I had uncontrolled SBS with bowel movements of 1 liter or more and was vomiting multiple times each day. I couldn't keep weight on my body, I was severely malnourished and at risk of a heart attack, brain seizure, and/or death every day from the electrolyte imbalance. I wasn't at a point that I could do anything to make me feel better. But what I could do was follow my doctor's recommendations religiously - I had to eat and take my medications without fail, no matter what. I didn't feel better by doing these things but I helped to combat the war in my body so I didn't feel worse with worse issues.
The fact is, it can always get worse and we need to take steps to prevent it getting worse at the very least. Eventually the roller coaster ends, it can't go on forever. Until a break comes, we must remember to hold on for our lives and do what we can to make it through.
This is my life with Familial Adenomatous Polyposis and Short Bowel Syndrome. I was diagnosed with FAP as a child, underwent total colectomy at age 9. After complications and 6 more surgeries. I had an ileostomy for 6 years and am currently living with a straight pull-thru.