The exhaustion of chronic illness, or when bad things happen to good people

I’ve generally been a “good” person. I try to do those ten things on Dalai Lama’s list. You know, be kind, not hurt others, let people know you love them, hear a tree when it’s falling even it you’re not there. In addition, there are my hard-wired Virgoan traits: I’m responsible, loyal, a good friend and hard worker. 

When I got diabetes at 18, after the “Why me?” stage passed, and the denial stage passed, I got back up on my feet and learned to manage this damn illness. Not that it was easy or simple, but it’s happened over days and weeks, months and years. I changed some behaviors, like eating smaller portions and more recently practically vacuumed carbs out of my diet. I’ve made walking a daily ritual and caught up on the newest insulins that have made this so much easier to manage. I do well enough that these past few years my A1cs are consistently in the 5s, and my routine is integrated, quite well, into my life. Amend that, my routine is my life, but I don’t mind, it works for me.

So here’s the thing: even with all this hard work, commitment, dedication and do-goodedness, every once in a while there’s a bump in the road. And I resent the hell out of it. “I’ve been good,” I’m screaming inside. “How can you do this to me!” “Is this how you repay me!? I don’t deserve this!!!” Don’t ask me who I’m talking to, some great Kahuna out there.

I am totally brought up short when something bad happens due to my diabetes. And something seems to happen every few years. Once again I have to face and deal with the fact that I don’t know what’s coming around the corner no matter what I do. And, I resent that the road I’ve worked so hard to make so smooth, has potholes underneath. 

Getting a second frozen shoulder six years ago, the year I was getting married, that required surgery and a three day hospital stay, was a pothole. Discovering, after 32 years of annual eye exams, with my eye doctor always astonished at the health of my eyes, that I have a slow-growing cataract, deflated me. Getting an official diagnosis a day before I left for Europe a few years ago, that I’d lost 25% of my hearing, devastated me. That wasn’t a pothole, so much as a crater. And I cried and cried in the Amsterdam train depot while telling my husband. It’s not widely written about, but hearing loss is associated with diabetes just like vision problems. The small blood vessels in the ear canal are just as susceptible to damage as those behind your eyes. O.K, buck up I said to myself looking around at all these tall blonde people eating herring. Life goes on. I’ll go on. And I righted myself and continued my march valiantly forward.

Last week another pothole opened. Oddly this one’s not due to a complication of diabetes. No, this one’s from trying to make my diabetes better. After so many years of taking injections, I, like most, have developed a significant amount of scar tissue where I inject. Shots now hurt somewhat, and I take between 4 and 7 injections a day to keep tight control. Last year I’d heard of a device called iportand when I saw it recently, I decided to try it. It’s a small, round plastic disc and like a pump, it has a little plastic tube that sits inside you through which to deliver insulin. Unlike a pump, it’s not attached to an insulin cartridge, so you stick your syringe through it’s little rubber stopper, plunge, and the insulin goes through the little plastic tube and into your body. So now, instead of feeling the prick of 12 to 21 shots in three days, I only feel one prick, when I insert the iport. Hallalujah, I thought the first day. The iport didn’t hurt going in, although I’d been told it could, (an inserter is planned to be on the market early next year) and I barely noticed I was wearing it all three days. Wow, I told my husband, I kind of feel proud. When he looked at me quizzically, I said,  “Well, I’m an early adopter. I’m doing something pro-active for myself, taking a new step.” Then I discovered I spoke too soon.

The second iport I put in hurt. When the insulin didn’t leak out I dismissed the first reason it might hurt, that there was a crimp in the plastic tube. Yet, that spot where the iport tube sat inside me felt sore over the entire three days. My initial feverous joy of being free from injections and pain burst into a million little pieces. I caved; this pothole turned into a crater. I held back tears for the final two days of wearing it. 

After 35 years of living with diabetes, trying to make the daily tasks, which I’ve accepted and perform (because I’m a good person) religiously, a little easier, that scar tissue that’s built up over those decades of injections conspired with the iport to hurt and humiliate me. (Yes, I could have removed it, but I’m good, you remember, responsible, committed) So, now, if I have 30 years of scar tissue, mostly in the same place, my abdomen, which is where I’d likely stick this thing so I can see and reach the little rubber stopper to inject, how can I benefit from this new device that could be really helpful? I’m pissed. But more than pissed, deeper than pissed, I feel penalized, tricked, cheated, saddened and maddened. I feel utterly betrayed, disappointed, and sorry for myself for all those years I’ve been so diligent taking my injections. Of course, this isn’t rational thinking, but what emotional tornado is? Why do bad things happen when I’m being so good?  

I told a friend who’s used iport now for almost a year, and who has mentored me through this, “You know, P…., I realize I’m just exhausted. This experience has taken so much of my energy: to get the iports, worry through the insurance procedure, gear up for a possibly painful insertion, contact the company twice when a rep never called me, to have to now track when to insert and remove the iport, to watch for tube crimping and see that my insulin really gets in, to wonder where everything I wear will fall against it.” Of course, I think this is about my being exhausted in the larger sense: from all these days upon days of ordering and keeping track of all my supplies, remembering to change my lancets and syringes, the daily food, exercise and insulin calculations, we could go on forever. What also dawned on me was that this experience killed my hope; that I could have made something better for myself, something easier and less painful with this disease. And I deserve my hope because I’ve waded through the river with diabetes for so long, and stayed afloat. And I deserve this device to work for me because I’m a good person.

Five days later I learned something else. When I began this piece I was thick in the middle of this emotional storm. Now it has passed. I have a new iport on. It didn’t hurt going in, I don’t feel it now, and I’m enjoying the freedom it gives me from painful injections. I learned, for the umpteenth time, that everything changes — problems, circumstances, feelings, thoughts. You just have to ride it out, whatever it is, and know it too will change. And while bad things happen to good people, I have my hope back that more good things happen than bad.

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