So many well-intentioned folks try to give me advice to "not give up by doing the surgery". They'd say "just try this other thing, what have you got to lose?"
I found myself getting frustrated, more than frustrated. Yes, it implied that I am a quitter (which I am far from) but that wasn't it. After all, I spent years pouring through medical journals and trying everything that had some evidence basis regardless of how painful or expensive or gross. Every safe therapy possible that had a reasonable basis was tried. Nor was my frustration due to the fact that I was getting unsolicited advice.
With chronic illness the ups and downs are very difficult to bear. That's obvious. As hope gets pummeled every time the illness relapses. I finally see what bugged me and it was not obvious.
When things get better for a day or two or you hit remission you suddenly gain hope. And when you gain hope it becomes very hard to accept your reality. This pattern would play out again and again: a shadow of my former self, barely able to walk, gets a bit of good news one day, perhaps I feel well for a few hours. Then at some level, I continue to believe that I can still benchpress in the 200's, run a mini marathon and bike Europe again. I had trouble seeing and accepting just how sick I was.
But, and here's the big realization: without acceptance you can't move on and actually get better. When you finally accept your reality you can finally seek the help you need, even if it is unpalatable, scary surgery.
So hope is a funny thing. On the one hand it can get you through tough times. On the other hand it can keep you in a state of denial, thereby stifling you from moving forward. The key is to anchor hope to reality, not wishful thinking.
I just wanted to add that if I could go back in time I wouldn't have done anything differently. I would have still been the same stubborn bastard and tried everything and held onto hope as long as possible.
ReplyDeleteBut there comes a time when you realize that if anything helps at such a late point (my flares could cause sepsis at this point) it won't be a full cure because there is probably a problem with me at the genetic level and no therapy or food or drug will cure that. Except an -ectomy. Hopefully.
You will be SO HAPPY to get your bag. I like you had all of the same symptoms you are having. The pain is unbearable! Having to change the way you wear your clothes is a small price to pay for getting rid of the PAIN! You just won't believe it and you will have a whole NEW LIFE! I am SO HAPPY for you!
ReplyDeleteSteven,
ReplyDeletePowerful recognition going on here. I, too, recall the folks who were desperate for me to try anything other than the surgery.
In retrospect, I wish I'd done it sooner. I did get my life back... a life of equally excellent quality but with an amazingly new appreciation for the moment.
dawn
Well said, Steve!
ReplyDeleteI agree, the time is when the time is . . and if the time is now - it is the right time. . . focus on the horizon. You will be amazed at the quality of life after getting an ostomy. UC is a terrible disease to live with day in and out. Wearing a bag attached to your side is only a problem if you let it be. It is very important to get the stoma placed correctly. Make sure this addressed before surgery.
ReplyDelete